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Date: 21.03.2012
From: Deborah

Subject: I would like to know what side effects there are on bio chemical treatments.

Hello everyone,
This is my first time in the forum and I would like to introduce myself. My name is Deborah and I have had severe Pysoriatic Arthritis for 12 years now, was first told I had it at 33 it runs in our family my mum was crippled with it and my son who is 25 also has it.I have been on all the usual treatments and have been on mtx for 8 years first the tablet form and then then injectable form for the last year it is now up to 25mg and is still not doing any good as my blood results have come back with high inflamation markers so now the Rhumy is talking about trying me on Bio-chemical treatments I dont know yet which one as I have to wait on a waiting list for three months (thats if the recent mri scan i had has shown any damage to the lower spine because he says you to have to pass 2 tests in order for you to be even considered for this treatment and as yet I have not had the results)but my question is if any of you are on this treatment could you please let me know what side-effects there are and also if there are any benefits to being on this treatment. Sometimes just feel like going off everything as I am fed up with the sickness the mtx gives you the tiredness you get although that can be put down to raised inflamation markers and the hair loss ( did not realise I was getting so thin up top) as the benefits off the treatment only lasts maybe a couple of days and then you are back to square one again. I would be grateful if someone could let me know how they feel on it and is it worth the wait.
Deborah xx
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Date: 23.03.2012
From: rhona

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Deborah, Welcome to the forum. I don't know if i can be of much help to you but i will give you my experience on the anti-tnf therapy enbrel. I have had R/A for over 11 years and have been taking a combination of sulphasalazine, MTX, and plaquenil, they seemed to work not too bad until around August last year when i started getting problems with my knees and feet and walking became very difficult, i had numerous joint injections that sometimes helped for a few weeks. I started enbrel on January this year, i inject once a week and i usually get some redness on the injection site lasting a few days but it's not a big problem, so far i haven't suffered any side effects but i don't really feel that they have made much a difference to the R/A and in fact some days i feel worse as my hands are now swollen and sore. I have read reviews on line about this drug and it does seem to help a lot of people, i think 2 out of 3 benefit from it, i am going back to the hospital next month and they will review it, i may well be offered another biologic drug. I would probably say that it is worth trying as everyone is different and some people feel so much better on them. xx
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Date: 23.03.2012
From: Colin

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

http://www.nras.org.uk/help_for_you/publications/publication_detail.aspx?id=a0B80000008XzmxEAC

hi Deborah
the nras , they got a pdf file that will help you , good informative download , was given copy by rhunny nurse , publish jan 2012 so up to date
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Date: 24.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi rhona,
Thankyou for your welcome and for sharing your experience so far on anti tnfs with me i am so sorry to hear that you have suffered from this horrible disease for so long and it is nice to be able to talk to someone who knows what you suffer each day as family and friends don't understand how bad you can feel and i am sure they get fed up with me.I am glad that you have not suffered any side-effects so far that is a good sign the rhummy hopefully will get the dosage right that will suit you best and hopefully they will offer you another drug please let me know how you get on.My rhummy says that they are back to square 1 with me he says he will start me on a mild dose to see how that goes he also says that due to new government rules i must pass 2 tests first test how many joints are affected and then the second test is a mri scan of my back to see how much damage has been done to my lower back i have passed the first one and if i pass the second one i must wait on a waiting list for 3 months that was in jan so should be hearing something soon will let you know how i get on.He also says that you can be very sick on it and that it can take a while to see any benefits if any but i will just have to wait and see.At the moment i inject 25 mg of mtx and also take arcoxia daily along with other bog standard painkillers but i am very sick on it and although i feel well for a few days after i can feel myself starting to slow down and be very tired and then the pains will start, the worse day is the day before i get my jab.Even today i feel tired but hopefully will get some news shortly.Also just wanted to let you know i have a great gp who i can go and talk to he says he does not know much about what it is like to live with this condition and is very interested in my point of view often we can sit and talk for ages and he says he always enjoys our chats which is nice as he was the first person ever to actually ask me what it was like to live with this on a day to day basis so i am lucky that i have him to chat to on ocassion he will tell me everything from the medical point of view and i will talk to him from the personal side. Thankyou for taking the time to reply to me and hope you are feeling ok today Deborah xx.
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Date: 24.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi colin,
Thankyou for taking the time to reply to me will certainly down load this information will do it now! hope you are well today.Deborah xx
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Date: 24.03.2012
From: rhona

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Deborah, I hope it won't be too long until you get something to make you feel better. That is good that you have a GP that you can talk to, I wish mine was like that. It does make a difference if they take the time to listen to what you have to say without looking at their watch. I had to get a chest Xray and blood tests before starting the enbrel. I have read that some people can feel the benefits very quickly when they start the biologics so let's hope that you will be one of them. I also suffer from extreme tiredness so i know what you mean, i think the disease and also the drugs can cause this. Take care and let us know how you get on. xx
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Date: 24.03.2012
From: Kim

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi

I have ra and have recently started with cimzia, before that I was on humira for a year. I found the main side effect for me was I had repeated infections on humira which resulted in me being on antibiotics constantly for about 7 months which meant a delay in doing the next treatment of humira as you can't do the injections if you have an infection so a bit of a catch 22 situation! I have just gone down with another infection since being on the cimzia, which Im hoping is just a coincidence! Apart from that out of all the treatments I have tried I dont get any nausea, or other side effects that I get with my other meds. I know lots of people the anti tnf's work really well and I think they are definately worth a try.
Good luck!
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Date: 25.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Rhona,
Thanks very much I certainly will let you all know how I get on and you are right if you have a good gp it does help a lot its funny when I come out from the gps I am always smiling as he always makes you feel a lot better.Also I agree the drugs and the disease do cause you to be so tired all the time but hopefully I will get sorted.Hope you are feeling well yourself today.Deborah xx
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Date: 25.03.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi deborah welcome, so sorry your going tho this like many of us the desision about meds is very hard to know whats best. for me in 2 yrs i have been on 5 meds and 2 anti-ntfs. 1st was enbral i was on it for 10 months had about 7 infections, plus site brousing and iritation.
now i am on cimzia and had 3 doses and have had the worse infections i have had for years. i have had broncitis, chest infection and this time broncitis, layrengitis, ear and eye infections. got to see my rheumy next month (appointment brough forward 1 month) can't take anything in mean time so i decided to come off all drugs to have a baby x
sorry to seam negative, the meds do work for many others.
good luck and hope you make your discission xx
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Date: 25.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi kim,
Sorry to hear that you have gone down with another infection and I really do hope that it is a coincidence and am glad that you do not suffer from any other side effects. I am a bit worried about infections myself and side effects as i have found even with the larger dose of mtx that makes me sick and I know the anti tnfs are stronger but i am glad that you know people on these drugs that have worked well for them that gives me a bit of hope, as were I live I have never met another person with the same illness as me only people that are 20 or 30 years older than me who have different forms of arthritis and on completely diferent drugs so I dont have anyone to talk to about these drugs so thankyou you so much for taking the time to reply and thankyou all for taking the time to reply hope everyone is feeling well to-day Deborah xx
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Date: 25.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina,
Thankyou for your welcome,and for sharing your experiences on anti tnfs with me,yes it is very hard to know what is best for us all. I am so sorry to hear that you have had such a terrible time on these drugs I knew that there would be side-effects of some kind and I have a funny feeling that I won't escape them as I can't even take co-codamol without being or feeling really sick but as nothing else is working I don't really have a choice so onwards and upwards as they say.I am glad that you have told me how it really is for you because I knew that anything that would be used for the treatment of these diseases would not be to kind to your body so thankyou for that and I don't think you are being negative just honest.How are you feeling without your drugs?Congrats on deciding to have a baby I think that is really brillant and wish you all the best I am sure you are so happy! and good for you not letting a horrible disease influence what decisions you make for your future and your families. Please let me know how you get on and thankyou again Deborah xx
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Date: 27.03.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

thank you i was hoping that people would see me being honest. pain killers don't seam to make me feel a lot so lucky that way.

when i got ill after having my son i said to my partner that this wouldn't rule me and to now it has for 2 years i have had nothing but pain, tiredness, aches, joints stiff and not been able to what i did before, even just walk so i need to make this dicission and get some of my life back and do something for me, partner and son. i always wanted 4 children so i had to tell myself that my body would only be put though this once so i have to do it now for me.

i feel a little worse and i have had to up my steroids to 10mg so i can get out of bed in morning ect... but i haven't been on a drug which caused remission but it can only get worse which i'm expecting lol.
thank you not sure the rheumy will be congratulating me lol. x
(again i sound negative)!!! sorry!!
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Date: 30.03.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina,
sorry to hear you have had to up your steroids I hope they are helping you a bit.i agree that you do get fed up being sore,tired and not being able to do the things you want it does get on your nerves because I feel the same.Dont worry about being negative I don't think you are I think that it is great that you are so honest and thats why we are here because who else understands how we feel I know I am glad I have found this site because I have had pa for 12 yrs and have never even met anyone my age with any kind if inflammatory arthritis and it is nice to talk to people who understand how I feel and I hope we can all become friends.Just wanted you to know that I already had my children when I was diagnosed with this disease they were 12 and 14 and I won't say it was easy but we all managed and the boys became really sensible adults they have their own families now so I am a grandmother now a boy and a girl only 3 weeks between them they are 10 months old and to be honest davina I think yes the disease might get worse with having another child but I have heard it goes into remission when a womwan is pregnant don't know if that is fact and that maybe it can get worse after but we are all different and I know for me maybe if I had had the disease before the children I might not have had anymore and then I would have lost out on my son and grandaughter now, but because I did have them I just had to cope and believe me you magnage.i expected to be really crippled by now and yet although I suffer quite alot of pain I am not, so hope all goes well and let me know how you get on look after yourself lol Deborah
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Date: 01.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi deborah yes steroids are helping a little and also 3 pound in weight in 1 week, i'm so upset even though i knew it was going to happen. i have had ra for nearly 3 yrs and never had a day pain free yet and i know its not going to happen for a while and looking at the positive.

i'm sorry you had pa for these yrs without anyone to really talk to i know coming on here as helped me more than anyone could imagine.

how being a grandmother when they come over i know its proberly tiering but wonderful, yes even children at 12 and 14 learn to help you and i feel sometimes guilt at getting my son to help and then my partner said it will be good for him to learn these things anyway. lol

yes some women can go into remission about 20% my gp said, so heres hoping but that baby for my son to grow up with is so important to me so theres no going back now lol ( not that i want to either).

so deborah how does your pa affect you?
do you work? xx
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Date: 02.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina how ar you feeling today?I can understand you being upset about putting the weight on the same thing has happened to me I am up to thirteen and 1/2 stone and am usually a size 14 but now I am a size 18 and getting bigger and it did upset me at the start but I have noticed that when your inflammation level is up you tend to lose weight as at the minute I have lost a bit but it is mostly my face and shoulders but it won't be long until it is up again and have now got to the stage don't care anymore I don't worry about it.
I must tell you that I am 45yrs old I have had pa since 33yrs but the rhummy thinks I might have had it since aged 10yrs I looked after my mum who was crippled with pa and had to have virtually everything done for her since age 7yrs as my dad took a major heart attack at aged 36 and as I was the oldest I had to look after my mum + brother and sisters but as they got older we all helped but had to leave school to look after my mum at earlist convenice but still managed to get a cert in com/care which left me that I was able work in the care homes anyhow met my husband had the children young but only had 2 children in case I would take the same illnes as my mum and then took this horrible illness.
I will be honest when I wake up in the morning I am like a solid block then it takes a couple of hours for me to loosen up then I feel ok for a few hours and then I start to really slow down and get so so tired and there is always something hurting but what can you do I think after a while you just get used to it and you are right when the children do come to visit sometimes you don't feel so bad and then there are times when I think I am not able to do this at the moment and whenever everyone leaves I just feel completely worn out also I have noticed that I have been getting so slow even when I have not been doing anything, and I was always the type of person who always had to be occupied some way.
I retired at 33 as I just could not do my work anymore and just could not walk the same distance and the pain in my shoulders were really painfull and my work mates noticed it as well but I knew myself and I was really scared that I would end up crippled like my mum.
I know that if I had not been on the drugs I have been on I would be really crippled and my joints twisted up just like my mums But in my mum's time they treated the disease differently so am thankful for that as a matter of fact I had to see the emergency doctor 1 nite to do with the side effects of mtx and he had trained in the rhematology dept that was his speciality and he was so surpised at how well my joints have been preserved also my rhummy said to me whatever you are doing you are doing it right that was last year now were back to square 1.
also wanted to say that we did have a gr8 child hood as we learned to do things for ourselves make decisions at an early age and that has helped me through life.
Sorry for the book but wanted to tell you my son has some form of inflammation in his spine and hips had it on and off since aged 16 doctors are not saying what it is but are treating him and he seems better although he to has had to give up work but is studying more so he can do a desk job his partner works full time and he does try his best to help with his son amap.
davina it is ra you have that is a horrible one to how does yours affect you?And have you found your treatments helpful? Deborah lol
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Date: 03.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi deb i feel like rubbish i know it was going to hit harder this morning mark had to pull me up so i could sit in bed (not nice) like you i am stiff for 1-2 hours (at my worst was all morning so expecting it soon) yeah i'm a size 20 at 16st 3, just put that on so hopefully going swimming a few times over this hoilday.

wow you had it a little the same as me, my mum went into deep depression for years after my brother was born with disablilies for yrs from the age of 12 my dad working 60hr weeks to bring money in, i too am the eldist of 4 so at 12 my sisters were in primary so i sorted them out then got ready myself to go school, yes i hated it at the time but now look at it as a major learning curve, sometimes i feel my son may feel as i did then (hate me for getting him to help ect) but mark said he will grow up doing it so it wil; be now different for him and he will understand.

anyway i got let go at work last yr age 30 due to illness as i couldn't keep working as a manager at a resturant, such hard work and long hours. i know at the moment my ra is non erosive but that can all change. about your sq 1 it comes in swings and roundabouts hope yours gets under control soon.
i'm sorry for your son at such a young age i really hope they get some help for him and sort it. bless him i know how hard it is to have an energenic 2 yr old so give him my wishs to be well soon.
ra affects all my joints, shoulders, elbows, wrists, fingers, knees (bad) ankles and now 1 of my hips. my gp things it where i limp but i thing something more but he said unlikely to have OA in hip at such a young age (we'll see i quess)
methorexate did nothing at all then had plaquenil, still na, the sulfas (intorant) then enbral helped a little with stiffness in morning and pain but did nothing for my bloods or imflammation in joints. i have to use crutches as my knee gives way at least once a day.

so now sorry to you about the essay x
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Date: 05.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina,
Thankyou davina I certainly will pass on your good wishes to my son I think it might be AS he has but the doctors don't want to tell him as he is so young.You are so young to have RA and like me you have had to deal with a lot in life and I know it is hard to give up work but you need to look after yourself because as i am sure you know that stress makes the illness worse.I guess you know all about family members having disabilities I am sure that must have been very hard for your mum as I can't imagine what it must have like for her that is so sad and hard for all the family,
but I think people like us who have so much hardship look at life differently things that are important to other people like houses,cars ,material things are not at the top of our lists I am happy if the important things in life are sorted out a least a bit.
That was a very physically demanding job you had I worked in restuarants and my feet used to be killing me that was before I was ill and could not understand why they were but know now why.
Like you davina I have pa in all my joints including my hips and used to use crutches as well but I found they hurt my elbows and wrists so much that I had to stop using them but always go with me husband everywhere but only go out when I really have to as I am so drained all the time but must tell you I was in B&Q a couple of weeks ago to get lights and was using a trolley so can't understand what happened next but was going up the asle and the next thing went over on my ankle it was as if it was'nt working properly well the trolley went flying down the asle I just saw the floor getting closer and closer bang down I went but this is the funny bit(don't laught) my glasses went flying into mid air and this man was walking up the asle at the same time and caught my glasses just like a goalkeeper I could not believe it and then of course everything was really quite the whole store and then the goalie(thats what I call him) and another man picked me up I was fine just really embarassed and then I joked that I promise I didn't have anything to drink today and I had got a weak ankle so they laughed but I got escaped at that not going back into the same B&Q again.Hope you get swimming over the holidays and enjoy the holidays.Enjoy our chats davina and don't worry about the essay as mine are like a book.Thanks for listening deb xx.
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Date: 05.04.2012
From: val

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

I would just like to thank you both, Deborah and Devina, for what you have written. I am pretty new to this, being only diagnosed a year ago, but although I am on mtx, sulphalasine and now hydroxychloroquine my consul has mentioned biochemicals if no improvement. I know nothing about them so you have really helped. I didn't know you have to undergo 2 tests. You have also answered my increase in weight and cronic tiredness. I lost 2 stone and have now nearly put it back on. How do you find swimming as when I have been I am absolutely exhausted after and sometimes don't feel I have the energy to get changed so it takes me ages.You say you have to have an mri but what is the other test. Like you Deborah whenever I go on the forum I just don't feel as if I'm on my own and people do understand. RA is something I just can't talk about and I don't want to be a bore so keep quiet. Really hope you both find some relief, at least the weather is improving, or it was, and I always have fresh flowers in the house as they always lighten my mood.
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Date: 05.04.2012
From: Kim

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi everyone
Val I have ra and know what you mean about it being nice to have this forum to talk about it as its difficult to explain how you are feeling to other people. I used to go swimming but found it was really hurting my joints and I struggled to get out of the pool afterwards. I have been recommended to try tai chi which sounds good as it's just gentle movement and there's no getting up and down off the floor and the relaxation part I need desperately!
Davina I hope you are coping okay coming off the drugs? Im taking advice from a company with regards to retraining and going back to work part time now that the lovely government are stopping my money, Im hoping to work from home doing admin work.
Deborah are you going to try the anti tnf's? Iv had ra since I was 25 and I went into remission when I was pregnant twice but it did come back with a vengenace after having my children! Iv just had my second dose of cimzia and praying I dont get another infection!
Sorry for rambling! Hope everyone is as well as they can be!x
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Date: 05.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi deborah i know its hard to live but all these things make you stronger. yes my mum had it hard and there was no-one really to help her, my sister is now also going though it will my neice and she has the same problems has my brother but not as bad and she is finding it difficult but my mum is a rock and an amazing woman for what she has acheived with me, my sisters and brother and now her grandchildren. hope your ok after your fall and i know how embasrasing it is when last week i was in tesco and my knee gave way i was on crutches but as i steped on to my right leg my knee gave way and my arms in the air my leg under me, well i'm sure you know the scene but it was horrible. have a great weekend and i love chatting to others that know what it is to be in pain but have to switch at smile on to hide the pain, well its amazing x

Val i know we are giving you so negatives to the bio drugs there are positives to when you go into remission, you do have to try tho, the way i look at it everything is worth a try no matter what. i do find swimming hard on my aching joints especailly if i have my son has i have to hold him and hands, wrists and knees get the brunt of it and yes getting dressed is the worse after.

Kim i have heard tai chi is really good for joints not sure how true, how did you find pregnacy and coming off drugs, i see you went into remission what stage was that and how long after having your children did it hit you again. i'm sorry the government are taking your money of you i too am at this fate but trying to get into the surport group which is extreamly hard. i hope you can do the admin work from home and give you the time and help your body needs. i really hope cimiza works for you. xx
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Date: 06.04.2012
From: Kim

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Davina
I noticed my pain/inflammation improve at about 12 weeks into both pregnancies. The pain didnt go away completely but I was able to reduce painkillers and came off steroids. After my first pregnancy it came back about 2 weeks after, with my second it was about 3 weeks after and my inflammation levels went off the scale. I must say though I felt so much better in myself when I was pregnant I didnt have the constant fatigue and to have pain that was manageable was great! Looking back over the past ten years or so being pregnant both times is the only time I have felt well.
Im struggling with a horrible itchy red rash since doing my 2nd dose of cimzia and starting to feel unwell again!!So not sure if Im going to continue with it.
Have a good easter
Kim x
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Date: 06.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi kim thank you for that was your ra controled before hand? my rheumy keeps saying get your ra controled then have a baby but i don't see the logic in that as when its controled you then have to come off meds for 3-6 months before conception so wouldn't you be back to pain anyway? lol

i hope the rash doesn't stay for to long and you don't get ill over easter, it wouldn't be nice not having gp's survice availible. take care x
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Date: 06.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi val,
Nice to hear from you I am glad that you do not feel alone when you come to the forum as it is nice to talk to people who understands what you are talking about.

know what you mean about swimming I to feel the same I can even feel tired just getting dressed in the morning.

The other test val is if you have nine or more joints affected at the same time and to the touch hurt so my rhummy says and yes I will difinately give anti tnfs a try as the mtx 25mg injections are not working I think this why I am feeling so tried all the time and am running out of options here.

If you find that you do have to start the anti tnfs please let me know how you get on I will do the same if they will let me start them have not heard anything yet.

Also think that is a brillant idea about flowers in the house you are right they do cheer you up.

Hope you are feeling ok yourself and have a great easter. Deborah xx
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Date: 06.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Kim,
Yes I am difinately going to try them but have to wait on a list and I don't if the rhummy is going to give them to me yet as I have to wait to see him but will let you know how I get on.

Hope you get on well with the retraining this goverment is mad as my rhummy nurse says they expect you to work but the employers still expect the same work from you as a healthy able bodied person.

I hope you do not have any more infections please let us know how you are.

Hope you have a nice easter Deborah xx
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Date: 06.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina,
so sorry to hear about your sister I am sure she is finding it really hard give her my best and as for your mum she reminds me of my dad he was the rock in our family and both our families have had it really hard but that is life we never know what it is going to throw at us but when things got my dad down he used to sing a song he had heard the american army singing during the second world war when he was a child it when like this,

Did you ever get one of those days,
did you ever get one of those days,
When nothing goes right from morning to night,
did you ever get one of those days.

And then he used to say well they can't get much worse I sometimes sing it to my own family and my sister when they are down and we still laugh at it and say wonder what dad would have made of this(whatever the problem may be) thought I would share it with you all.

Sorry to hear about your fall to, know exactly what the scene was like,hope you did not hurt yourself I felt really sore and stiff for a couple of days after but was more embarassed than anything.

My neighbour who is 85 yrs old gave me a beautiful camila rose bush yesterday though that was so nice.

Let me know how you are keeping and hopefully we will all have a bit of relief happy easter davina and to all our fellow forum members.Deborah xx
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Date: 07.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi rhona,
How are you, hope you are ok,
I will certainly let you know how I get on if they start me on the treatment I am so sorry I have not replied to you earlier I thought I had until I looked up this page thankyou for replying to my post and wanted to wish you a happy easter Deborah xx
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Date: 08.04.2012
From: rhona

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Thank you Deborah, I am a little better today although my hands are quite swollen. I have the hospital on tuesday so not sure what will happen with the enbrel as it hasn't made a huge difference to me. I hope you are feeling well. Your neighbour sounds lovely, i bet that brightened your day. take care xx
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Date: 08.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi deborah that is a real lovely poem and its so true, my sister as it hard and my mum is like a restbite for her but her partner is usless and can only bother about 2 times a month, gladly she has seam sence and got rid of him and since he is having both his children every sunday now since jan so helps her a little.

my fall was ok hurt my hip a little but embassing more wanted the floor to swallow me lol. i will be seing my rheumy end of month so will talk to him about my hip as its a new pain and have looked into it and maybe a sign of OA but not to worried yet!!! at the moment i don;t think i have been in so much pain and i know this pregancy when it happens is going to take it out off me soo much and know that i may only be able to put my body tho it once so i want to do as much for it to be a sucess as posible and i am looking at sterilization during a c-section so we'll see what happens because after a baby i want everythink going as pos.

happy easter to you to and all on arthritis forum. xxxx
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Date: 12.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi rhona,
sorry I have not been on-line for a few days, Yes have been ok wish this weather would make up its mind what it is doing i hate this time of year it makes my arthritis so bad thankyou for asking.sorry to hear that the enbrel has not made much of a difference how long have you been on it although sometimes the longer you are on a drug the less effect it has I am sure you know all about it.How did you get on at the hospital?hope your hands are a bit better I have noticed my own swollen and find it harder to open things also have noticed that I have slowed down a lot esp since christmas did'nt realise how much don't know if I can stick another winter.It did brighten up my day when my neighbour gave me the plant its amazing what does.Hope you are a bit better rhona and hope the hospital helped a bit.I hate a tuesday because I have to give myself my mtx injection and am finding that I dread it and then you are so sick even the next day sometimes wonder what is worse the disease or the drugs but what would we do without the hospitals dont think I could stick the pain without the drugs. you take care as well Deborah xx.
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Date: 12.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi davina,
How are you today? I am so glad to hear your sister has your mum and you I know because we have this disease we are not much good to other people because it slows us down so much but a least we can talk to our family and give them as much advice as we can.Glad to hear also that he has to help out a bit some men are just so useless they can't cope with any problems and think she was wise to get to get rid of him better off on her own at least she can make her own choices now in life.

Know what you mean about falling I felt like not getting up but as I had a man on each side of me to help lift me up so had not much choice but it was good of them to help me been watching my ankle carefully since a bit scared it will happen again.davina you are talking about a pain in your hip well I have been taking a strange pain to it goes down from the hip joint down the leg and feels as if it is a solid pain the whole way down and is really painful but I know that it is my arthritis so yours could be the same or it could be if you are you off your drugs at the moment it could be that you feel things more but hope they can sort it out.

Glad to hear that you are pretty good at the moment and I think you will be ok with the pregnancy although I can understand you when you say you would like to be sterilized i just had 2 children as I was scared I would take the same thing as my mum and it turned out I did so hopefully everthing will go well for you and you will have a little brother/sister for your son I really do wish you well am even getting excited myself. I would have loved more children but a least I was able to have 2 which I am so glad about although have 2 little grand children which kind of make up for things a bit wonderful how things works out at times I call them the beanies as the italians call their kids bambini's as i noticed when I was on holiday 1 time and thought it was cute. Take care Deborah xx
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Date: 13.04.2012
From: davina

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

well the good went i think because i said it, the flare has come with an avenagence and is not leaving, pain everywhere and the zomorph isn't helping at night even on 2 now. steroids upto 15mg and i'm going to increase to 20 2morrow.

how are you now from your fall?

my sister done the best thing ever getting rid now his doing ssomething everyweek with his kids which makes my sister happy.

the pain around my hip, down my leg and in my groin is even worse it does seam that when i come of all meds it got worse so could be to do with ra but was painful before and only started in jan.

yeah sterilisation isn't an idea i would have wanted as i did want 3/4 kids but i have to do whats best for me and being of meds at the moment is really hard so i don't know if i could put myself tho it again.
i hope your family are well and your son is keeping well too. x x
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Date: 13.04.2012
From: rhona

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Deborah, thanks you for your message. I have been on enbrel for 3 months and when i was at the hospital they didn't think it was helping much so i have been told to stop it, i really hoped when i started it that it would have made a difference but unfortunately not. I have now to wait to see the consultant to see what treatment they suggest. I am still very sore and stiff, my hands and feet and knee are the worst at the moment, i do get so fed up with it as i am sure you do to, but we just have to keep struggling on. I still take the MTX 22.5mg in tablet form and have been lucky that they don't make me sick although i think all the drugs i'm on are becoming less effective, as you said they do seem to be less effective after a while. hope this weather does pick up and we may all feel better. take care xx.
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Date: 13.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi davina,
Family are well and I am ok since the fall thanks for asking. hope your family are all well.


Sorry to hear that you are in so much pain at the moment I do hope the increase in the drugs will help you and I know that sterilisation is a a hard choice to make but you know what your body can stand and I agree that you do what is best for you.

My son is still waiting for a diagnoses but his anti inflamatories seem to be helping a lot as long as he watches what he is doing,said he went swimming last week and was not doing a lot of swimming just there with his son and when he went to get out of the car said he could hardly walk and had to struggle into the house but rested that evening and the next day so it seemed to ease and he has been ok since but says he is fed up feeling like an old man of ninety but was talking to him today and he is going to start his cartoon drawing again and maybe be able to find work doing it or some other way that he can work from home even if he has to retrain again so that is good that he is looking to the future.

Mean't to tell you that I have had the biggest mouth sore since last week got vitimins from the chemist they did start to clear it up but I have noticed it is back this evening again and just as mean and big as ever this is the biggist mouth sore I have ever seen I know its to do with the mtx so might have to go off it dont think I could stand this every week I can hardly eat with it i will soon lose weight if I have to stick this,still have not heard from the specailist about the bio logics but might hear shortly.

Please let me know how you are getting on with your drug increase Deborah xx.
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Date: 13.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi rhona,
That seems like a lot of drugs you are on really strong ones to, I am sorry to hear that the enbrel is not making a difference thats the one they were talking about starting me on the rhummy says that enbrel is a mild form of anti tnfs and if it did not work he would try me on different ones so as to find the one that suits me best so maybe this is why it is not helping you because it is milder and it may not be suitable for you but hope they find something that does suit you.

Glad to hear the mtx does not make you sick at least that helps a bit when I was on the tablet form the 22.5mg made me sick so went on 25mg mtx injections which stopped the sickness but I hate them and to be honest I decided shortly after christmas that I had, had enought as they did not seem to be making much difference or so i thought,(silly me) so stopped them one week well I can tell you never suffered pain like it it felt like all my bones and all the spine bones were broken and felt like they were getting pulled apart and took a really bad pain in my hip could hardly put one foot by the other so I could not wait for the next tuesday to start back on my injection then when i did get it i was so sick i had to go to the em doctor so will never do that again and still have the pain in my hip.

To be honest I do get really fed up with pain feeling tired and now the latest is I have had the largest mouth sore since last week got vitimins from the chemist they were helping but noticed that its back again this evening this is the biggest one I have ever had so might have to go off mtx, I was always ok no side effects on mtx but since i have been on the larger dose I have noticed different things hair loss mouth sores hot flushes and a rash which looks like sunburn but only as last few weeks except for the hair loss and sunburn always have had those did not realise how much hair I have lost got my niece to take pics of my my head with her mob and just saw how much hair I have lost its a bit scary.

Have you had any of these probs rhona?

I think when you see the specialist they will find something to help you hope you are feeling a bit better, but did you notice just how much pain we put up with everyday and you nearly get so used to it you think there is something wrong when you dont have any.Take care Deborah xx
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Date: 14.04.2012
From: rhona

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

Hi Deborah, Yes, it is a lot of drugs, i also take sulphasalazine, plaquenil and low dose steroid, i have been on them so long now that they are not too effective anymore. I haven't had any problems that i know of with the MTX, and i really don't know if they help but a bit frightened to stop them in case i become worse. You said you have a mouth ulcer, are you taking your folic acid? you can take this for 6 days a week if you have to, although not on the day you take MTX and this could help a lot with the side effects. From what i have read the enbrel does seem to help 2 out of every 3 people so i may just have been unlucky. Have you actually had hair fall out? i don't know if it's imagination or not but my hair does seem a bit thinner but i haven't noticed anymore on my hairbrush or pillow. Sometimes i think i would be cheaper buying a wig and save all the hairdresser costs lol. take care xx
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Date: 16.04.2012
From: Deborah

Subject: Re: I would like to know what side effects there are on bio chemical treatments.

hi rhona,
that is a lot of drugs and yes sometime's we think they are not making a difference but I bet if we stopped them all we could not stand the pain I know that I start to burn when I am due my tablet's I even know what time it is.

Thankyou for letting me know about the folic acid I used to take 1 every day and then when I changed to the injection they told me to only take it 1 day a week so did not know that you could still take it every day except the day you take mtx.

I am a bit worried about this mouth sore it is getting no better no matter what i try have been on 2 tablet's every day for 2 weeks with all the vitamin b's and folic acid but going to the doctor this week. I think that as soon as it starts to mend up I take my injection and then my immune system is so weak again it cannot fight it although have had it for 3 weeks now.

As for the hair loss I noticed it on the carpet then on the worktop and on my top's but it is worse when I wash it but this has happened over quite a long time so it has been coming out slowly and I have not noticed it until this year. I wondered why my head was so cold this year and I noticed my parting seemed very wide that's when I got my niece to take the pic's but knew that on mtx it is a side effect so yes think I will be thinking about a wig to, well a least my head would be a bit warmer ha ha and yes we would save a small fortune on the hairdressing cost's but seriously hope this is all I am going to lose.

Hope you are keeping well and enjoying the nice weather it was beautiful today actually went for a small walk and sat outside today in the garden it was so nice to feel the sun on your face so hope you enjoyed it to take care as well rhona Deborah xx
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