Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 18.08.2013
From: Helen

Subject: side effects

Can anybody help....IV been taking 20mg methotrexate since Jan 2013 IV been short of breath for quite a while. Spoke to my gp last wk about it but no idea why she is sending me for a chest xray. Could methotrexate be causing my breathing problem??
reply | back to forum

Date: 18.08.2013
From: rhona

Subject: Re: side effects

Hi Helen, Yes I think it could cause breathing problems. I think you should phone your Rheumy team and ask them what you should do and if it is safe to continue taking it.
reply | back to forum

Date: 19.08.2013
From: Linda Bradley

Subject: Re: side effects

I was told that it affected the chest and needed regular x-rays. I started mtx in April and had a routine x-ray then. They should of explained it all to you before putting you on it. Hope everything is ok. Take care.
reply | back to forum

Date: 19.08.2013
From: Colin W

Subject: Re: side effects

x ray sound good idea to have , may show up anything else going on but would talk to your rheumy nurse as they should know
reply | back to forum

Date: 19.08.2013
From: helen

Subject: Re: side effects

IV been for my chest xray whilst out torbay thought I would pay taru a visit as couldn't get to talk to rheumy nurse on their phone number. Anyway the lovely lady on main desk got thru told her my problems she going to look at today's chest xray I need to contact her tomrro pm for her reply. I'm having a very rubbish day today feet painful&swollen as is knees actually all joints. Roll on tomorrow. Thanks to u all keep you posted.
reply | back to forum

Date: 20.08.2013
From: helen

Subject: Re: side effects

Latest update.... spoke to rheumy nurse today x ray seemed fine but could hear that Im having trouble with my breathing when talking. She suggested to stop mtx within 2wks I should notice if there was any change or not. To phone her with an update. Told her I was feeling rubbish and awful painful joints exp the feet oh dear was the reply!!
I'm feeling that I have to put up and shut up. Husband and family are fed up and worried they are wanting answers as well as me but just get passed around for more ultra scans. Waited two wks for nurse to send referral form to appts I take it she forgot usually 48hr wait to call. Then the form wasn't filled out with what areas that are needing to be scanned so now another wait for a date due to 4-6wks waiting list. No more steroids till after.HAPPY DAYS. ( Not) Fed up with moaning and having to chase things up and to listen to family&friends saying just can't believe it. Is it just me or does it happen to others? Sorry for moan.
reply | back to forum

Date: 27.08.2013
From: helen

Subject: Re: side effects

Hi to all. IV been off the mtx and folic acid now for a wk. I'm feeling pretty rubbish with both knees in pain with oa. Feet have become the feet from hell even when in bed I feel the heals could have sores on them thru pressure but they r fine. Rest of joints stiff and becoming swollen daily. I'm forever tired but night time sleeping is becoming a problem. But I'm thinking throughout all this my breathing seems a little better so maybe the mtx isn't right for me. IV read older post I didn't realise there's so many other drugs available IV been on sulv last Oct til Dec when I became so ill my own Dr wanted me admitted into hospital but not for me! Iv had other health test to do with losing blood becoming aneamic but all tests results are good b/c now good so im of iron to see if b/c stays good enough for no iron &further tests but didn't realise you can become aneamic but only read this the other day. So much to learn. Question is...have I been unlucky or is it common to have these ups&downs with this disease. I'm from torbay and gonna come to the nxt group mtg will I be seeing any faces to go with the names from this site. Thanks for taking time to read this.
reply | back to forum

Date: 27.08.2013
From: rhona

Subject: Re: side effects

Hi Helen, That's good that your breathing feels a little better but sorry that you are suffering so much at the moment. I don't think being off mtx for a week would affect your joints so quickly, I think you probably need to be looking at something else to help. You should qualify for an anti-tnf as you have been on two DMMR'S.

It is quite common to have anaemia and other probems with r/a. I take thyroid tablets as that can be affected too.

Wish I could go to the meeting in Torbay but not possible as I live in Glasgow.

Hope you feel better soon. xx
reply | back to forum

Date: 28.08.2013
From: helen

Subject: Re: side effects

Thanks for ur quick reply rhonia IV got psa and oa also I'm on 75mg thyroxin since may 2012. IV had hand problems since 2006 but nothing showed up until April 2012. Last year was a bad and sad year for me I lost my life long friend to cancer at 46yrs. They do say a trauma upset death can bring things to the surface. I wasn't having good days or many with mtx anyway even tho rhumy nurses couldnt understand why I wasn't feeling that good hence ultra scans on one foot and one ankle and left elbow first the elbow was arthritis another few mths down the line could be tennis elbow. Registra has now left maybe consultants should do the first appt for correct diagnoses. My ot did think i was also showing signs of fibro has given me a booklet and yes it does seeing my own gp thursday for a chat. Don't I go on I hate this moaning side of me! Hope ur having this lovely weather that we r having this summer bit too hot for me but lovely for holiday makers and kids school holiday.
reply | back to forum

Date: 28.08.2013
From: rhona

Subject: Re: side effects

Hi Helen, You can moan all you like on here, that's what we are here for and I do my fair share of it lol. I have r/a but I believe it is similar to psa in a lot of ways. I do believe that stress and trauma does affect our health. I have had a lot of stress at my end too, it is difficult at times but we just have to struggle on, I guess things could be a lot worse.
We have had some lovely days this summer, it is usually a lot cooler here in Scotland but the last few days have been pleasant. Perhaps we will have an indian summer. It's after 1am so I should really get to my bed.
Take care xx
reply | back to forum

Date: 28.08.2013
From: helen

Subject: Re: side effects

Afternoon to u all.
Rhona was good to hear from you late last night or rather early morning. I too was awake but had made it into bed but no sleep until gone 2am. Reading back to ur msg to me u mentioned anti-tnf wot is that? Where would I find info to try and understand this treatment. So much to learn about this disease. IV worked in residential homes for the elderly many had arthritis they would move and I could hear and feel their bones creeking I can now understand how they must have felt when dressing undressing they would cry out with pain. How times have changed we r lucky to be given treatment for this awful distressing disease. I feel a little easier today and no moans. 2nd lot of washing on the line I tend to find washing on these nice sunny days.
reply | back to forum

Date: 28.08.2013
From: rhona

Subject: Re: side effects

Hi Helen,

anti-tnf's are the newer type of drugs for ra and psa. They are expensive drugs and that's why they try out the cheaper older ones first before giving you them. I was on Enbrel last year, that was a weekly injection but it didn't help me so I am now on a biologic drug called rituximab, it is given as an infusion every 6-12 months and it has helped a lot with pain and mobility. If you ask at the hospital about them, there is quite a few different ones they can give you.

I am pleased to hear you feel a bit easier today, isn't it strange how some days we can feel really bad and then the next day a lot better. xx
reply | back to forum

Date: 06.09.2013
From: helen

Subject: Re: side effects

Hi can I moan tonight please.
Having a few awful days. My feet are driving me mad due to pain swollen burning up in bed. OA in knees also swollen strange shape burning and painful rubbed cream in them today&tonight. Fingers wrists again painful and swollen. Still not on any meds for PSA as came off mtx due to breathing problems have to ring clinic nurse Tues for next episode. One good thing my breathing is so much better. I didn't feel mtx was making me feel alot better when on it so without it has just made my arthritis back to how I was this time last year. A whole year feeling rubbish my tiredness is another story!!
Sorry for my moan very tearful with it all. Hope tomorrow is a coping day I plan to do nothing but rest up.
reply | back to forum

Date: 06.09.2013
From: Colin W

Subject: Re: side effects

hi Helen , I would ask about anti-tnf , some work very well be it may take time before they find one that works for you

Enbrel is good but had injection site reaction & put on golimumab (Simponi), with RA you have to take it with Mtx but with PSA you dont + there are several others we can try
reply | back to forum

Date: 07.09.2013
From: rhona

Subject: Re: side effects

Hi Helen,

Sorry to hear that you are suffering so much, it is horrible when it gets that bad. I would hate to go back to feeling the way I was 18 months ago. I agree that you should ask about the anti-tnf's or at least get a steroid injection to help just now. It's good though that your breathing is better so keep your chin up, things will get better. xx
reply | back to forum

Date: 10.09.2013
From: h milden

Subject: Re: side effects

Hello all.
Had a bad weekend tiredness painful joints. Phoned rhumey clinic today as needed help. I was offered steroid tablets but told them I can't as having ultra scans on 25th Sept. I was then told to try mtx again but declined after breathing problem and to be honest my feet ankles and elbows hadn't eased but In fact got worse with mtx. IV been told to say I need help they should see you on an s.o.s appt I was thinking tomrro,Wednesday but no 26th Sept. Tears started the nurse said oh dear you arnt feeling good my answer was no but send the appt letter to me. Does this happen to most or just bad timing for me. Sorry bout my moan IV never moaned about the nhs but this clinic takes the biscuit.
X
reply | back to forum

Date: 10.09.2013
From: Linda Bradley

Subject: Re: side effects

Hi Helen, no you're not alone. I feel like I have to battle to get anything. My appts get cancelled, my rheumy nurse has been off sick. No joy at Gp's. Our Rheumy dept is the worst dept in our trust. And I work in the hospital! I have pains in my foot, on the top, down the side, I'm hobbling around. I did have an x-ray last week, but not holding out much hope. No one tells you what else it could be. I'm 53 and feel 73! Sorry, went off on one there... hope you get some help, but remember... you are not alone.
reply | back to forum

Date: 10.09.2013
From: helen

Subject: Re: side effects

Hi Linda thanks for your reply I'm glad I'm not alone. Feeling brighter today tears have gone just fed up with it all. When ur not good either with side effects of medication or symptoms of the disease the last thing you want to do is chasing the clinic nurses and asking for help. Its just not fair.
Linda I hope you get some good results from your xray and you'll be walking around as a 53yr old with a spring in your step. Thanks
reply | back to forum

Date: 12.09.2013
From: Linda Bradley

Subject: Re: side effects

Thanks Helen. Its been over a week and still no results!! Everything takes so long. Hope you're feeling better. Sometimes a good old moan does wonders ha!
reply | back to forum

Date: 12.09.2013
From: helen

Subject: Re: side effects

Hi Linda sorry you'v not had any results back. Just how long does it take to look at them everything is sent through email etc now a days but still takes just as long. This waiting game doesn't do us any good. Iv had a bad few days or rather weeks. Getting nowhere with rhumey clinic or team apparently I'm a complex case. Yes I have chronic back pain for the last 10 + yrs I know the difference from that pain to this joint pain, stiffness tiring disease I have to have more scans before they can give me treatment for these other new joint pain or rather worse than before joint pain. If the scans prove its not due to the arthritis I have to go to a pain management clinic of which IV been before but couldn't get my head around how i block the pain from going to the brain. Anyway losing the plot IV seen my own gp today IV to increase pregablin add oramorph at nite to knock me out just to get some sleep. I need complete rest as I'm having a flare up. How a friendly face&voice can make things a little better in half an hour. So I'm being lazy for a few more days get some sleep and wait for the next hospital appt. Oh she's also writing to change my consultant after my last appt with him. Think he was having a bad day but he then passed the bad day onto me and reduced any respect or any confidance I had in him go out the window.
Oh I feel a little lighter now that weight has been lifted from my shoulders. Again!!
Xx forgot to say I'm now not on any treatment for arthritis
reply | back to forum

Date: 13.09.2013
From: Linda Bradley

Subject: Re: side effects

Hi Helen. Oh god you poor thing. I'm glad your Gp is understanding. I'm still struggling with my foot. I work at our local hospital, you would think I'd get better treatment.. I finally spoke to someone today who had looked at my x-ray. He said there was no inflammation. But said an ultrasound may be helpful, so more waiting! Something must be wrong as I can hardly weight bear and pain is going up my leg. I'm going to Gp's on monday to have my bloods done so I'm gonna have a chat with him. Feel like going on the sick, but don't like too. I'm on mtx.. 8 tablets... dons'nt seem to work. So fed up. Anyway, hope you get sorted soon. Take care. xx
reply | back to forum

Date: 13.09.2013
From: helen

Subject: Re: side effects

Hello Linda. Im waiting 7wks for my appt for an ultra scan on one foot and one elbow trouble is the right foot and elbow has now started with stiffness pain and swelling. Sorry to be a bearer of bad news for waiting list on scans could be just in our area tho. IV slept the day away so I'm doing as I'm told! I didn't think mtx did much for me either but you must ask the clinic nurses why you don't feel much better whilst on it. I too was on eight once a week. My spots cleared which was good but since stopping my head is covered in them. My 20 mth old g.daughter picks the scabs out bless her but it keeps her quiet and still. Do you have yellow toe nails with ridges. I do. My big toe nail and around that area is so sore could it be gout? God don't I go on IV nobody around me who understands this type of arthritis so feel very alone. Friends have disappeared IV also given up work couple years ago due to the back problem so IV lost even a normal chat with work mates and residents. My life long friend passed away last may aged 45 so I blame her for this as I think it had laid dormant since 2006 they say stress upset can set it off. She would laugh if she could hear me say that bless her. They say its good to talk. Thanks for your replys. Helenx
reply | back to forum

Date: 14.09.2013
From: Linda Bradley

Subject: Re: side effects

HI Helen, god you are in a state. I don't think our waiting lists are that bad!! I don't have spots or yellow toe nails but I have ridges. I can understand why you are so down. I think my friends and colleagues are fed up of me moaning. If you want a good moan, go ahead I don't mind. Take it easy. Linda x
reply | back to forum

Date: 14.09.2013
From: helen

Subject: Re: side effects

Thank you. Feeling very unwell very tired but most of all lonely with my thoughts. Had a couple hrs out this morning husband took me out for coffee have had two complete days of rest needed to get moving today. Have been in bed since 7.30pm but find I relax better here than the sofa.
Its hard when you have to wait for appts I know we aren't the only ones needing appts but just takes longer to get better. As I say nhs has always been good to our family and I never moan about the excellant care&work they do but feeling a little deflated with this clinic.
Thanks Helen x
reply | back to forum

Date: 15.09.2013
From: Linda Bradley

Subject: Re: side effects

Yeah, I feel better in bed. And I feel let down by the clinic etc. As I said before, I work in the place!! Anyway glad you could get out. Fresh air and different scenery would do you good. Can't do a lot today, don't know what its like where you are, but its dull and windy here. Waiting for the rain to start. Depressing. Linda x
reply | back to forum

Date: 07.11.2013
From: helen

Subject: Re: side effects

Iv been back on mtx for about 6wks now. I noticed last week my breathing problem coming back. I did phone resgistra last Friday for an appt as feel mtx isn't working for me. Not heard from her as yet. Very frustrating. Breathing has become worse since this morning even when I'm sat down I'm trying not to panic. Last time I had chest xrays and lung function all came back fine. Any suggestions on what I should do. Feeling rather fed up with it all as iv said before is all this worth it.
Sorry meant to say registra said to try mtx again as test showed no signs of lung problems even tho my breathing had got better without it. Very confused and fed up with it all.
Helen x
reply | back to forum

Date: 07.11.2013
From: rhona

Subject: Re: side effects

Hi Helen, I would call your rheumy nurse first thing in the morning and speak to them. I would be worried at taking it too if that's happened again. Are you on any of the biologic drugs or been offered them? I believe in listening to your body and it sounds like it doesn't agree with you even although the xrays were clear.
Hope you get some help from them. x
reply | back to forum

Date: 07.11.2013
From: rhona

Subject: Re: side effects

Hi Helen, Sorry, I remember you enquiring in a previous post about anti-tnfs and I think you should ask about getting on them.
reply | back to forum

Date: 08.11.2013
From: Chris

Subject: Re: side effects

Hi Helen,
Sorry i havn't really looked at this thread before. Bless you honey, you are going through the wars.
As i mentioned on another thread i too have PA, with the yellow ridges on the nails etc.

As Rhona says, get on the phone to the dermy or rheumy dept, and ask about the biologics (anti- TNFs) i think they will help you a lot, but you only qualify for them if the MTx doesn't agree with you.

Hang in there, there is light at the end of the tunnel.
All the best,
Chris
x
reply | back to forum

Date: 08.11.2013
From: helen

Subject: Re: side effects

Hello Rhona and Chris thanks for your help with advice. Phoned the consultants secretary this morning explained the problem im having with mtx also that iv not heard back from last wks cry for help. Said she would contact the rheumy nurses. Ten minutes later nurse phoned i explained again said for me to visit my Dr for a check up for a chest infection. She herself will talk to registra today in clinic and she will then contact me on Monday with the next step. I'm thinking the mtx injection is now out of the question so will have to start thinking what else is the best to take. Update on Monday.
Helen. X
reply | back to forum

Date: 09.11.2013
From: Chris

Subject: Re: side effects

Glad to hear that the ball is rolling. Hopefully you won't have to wait too long.

If you get time in your appointment with the GP, it might be worth asking about the possibility of adding a NSAID in with your other medication (such as arcoxia). It might be able to give you some inflammation relief.
Best wishes,
Chris
x
reply | back to forum

Date: 12.11.2013
From: helen

Subject: Re: side effects

Hello all. Had my phone call today from registra shame I had to chase it up at 4.30 had been waiting all morning for her to call as she didn't thought I would call the rheumy nurses lines open at 2pm til 4.30 in that time it was engaged. Called registra secretary
Within minutes I was talking to the nurse. Anyway she did get in touch then with registra and for me to read info they are gonna send me on two drugs one beginning with H the other L long words I'm gonna read up on them online. Does anyone know what to expect with these. Sorry for the long story just very fed up with it all. They say stay stress free as this doesn't help this disease but they are giving me stress. Upset and tired with it all is it worth it I ask myself.
Helen
reply | back to forum

Date: 14.11.2013
From: helen

Subject: Re: side effects

Any help would be grateful. Had my info today and appt for WK Friday. Iv to read up on the two treatments offered but seems that they are putting me on the one beginning with L as appt is for 1hr with a group of 5 patients also having this drug. Bit worried with side effects my liver hasn't repaired itself properly since last December when on sulfa. The only good thing about it is you can have weight loss. Iv put on over two stone in 18mths.
They don't seem to be offering any TNF???? I'm not very glued up
on any treatment its all very confusing to me.
Thanks helen
reply | back to forum

Date: 15.11.2013
From: Sean

Subject: Re: side effects

Hi Helen

Found this info on Leflunomide

http://www.medicinenet.com/leflunomide/article.htm

Says that it is often ruled out when liver problems.
reply | back to forum

Date: 15.11.2013
From: helen

Subject: Re: side effects

Thanks Sean. I will be reading up on it over the weekend. I do feel the other drug would be better for me the other long one beginning with H...... I do have high bp which is being treated and also on omoprazole and domperidone for the gut. What ever tablets I take for any other health problem I always seem to suffer gut problems. I just worry that both these tablets will make things worse for me. I will make a list of questions ready for next Friday.
Thanks again.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

1+3=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board