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Date: 25.02.2012
From: bsk

Subject: Enbrel, new thread, reply to Rhona

Hi Rhona, thought I would start a new thread as other one is getting very long! Headache seems to have worn off this evening. Been doing a bit of gardening which has aggravated my joints so no improvement yet but think it is too early.

How are you getting on? I hope you are feeling a lot better today.
xx
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Date: 26.02.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

I was thinking of doing that too bsk that was some length lol welcome back rhona glad ur a bit better I'm still on antibiotics and 2 b honest feel no better joints r sore I'm getting my dr on Monday need to see about a referral for my jaw it's really bad just now.

Bsk glad your eventually on the enbrel the headache shud ease u had that at the start.

Tc ladies I'll keep you posted xxx
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Date: 26.02.2012
From: kylee

Subject: Re: Enbrel, new thread, reply to Rhona

hi just thought id post my enbrel experience. I have been on enbrel for around 12 months. only in the last 3 months have i noticed any difference. i still flare often however the flares anrt as bad. usualy when i flare my joint will be like a football full of fluid that completely restricts the joint of any movement. how ever now my joint still swells but only half the size it used to. i get bad bouts of fatiuge. for around 4 days at a time. i still get the horrid pain when i inject it stinks\burns sooooo bad. i also still itch over injection site for few days. today im struggling with my right sholder blade its a stabbing pain my chest also hurts when beath in. i have noticed since taking enbrel i have alot of muscle and tendon pains the other day i could hardly walk as i had calf pains in both legs and shin split pain it was awful. but even with all my pains i still have id say enbrel has helped it hasnt took everything away but its made it easier to cope with as less swelling = less pain
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Date: 26.02.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Girls, That's good that your headache has worn off and it is early days for you bsk, i really hope it makes a difference to you but don't overdo it.Sorry to hear that your jaw is so sore lynn, i hate it when mine is sore and even opening my mouth can be agony, poor you. You probably need something else to help with the pain til it settles down. Glad to hear enbrel helping you kylee, i was expecting to be almost pain free with enbrel but i guess that would be too much to expect. take care. xx
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Date: 27.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi everyone,

Lynn, how are you getting on, what did the doc say about your jaw today?

Hi Kylee, interesting to hear your experiences of Enbrel. It's pretty much what I expect to happen with me, to be honest. It does sound as if it is helping though.

Hi Rhona, how are things going? Are you feeling a lot better?

I feel incredibly tired (but do have family staying, including young kids.) Headaches come and go. My wrists are bad but I have been carrying small children. Want to go to bed by about 9pm, which is unheard of for me!

take care everyone xx
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Date: 27.02.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies well I didn't get very good news when I spoke to my Dr today she told me my wbc was way low at last weeks test and I've to get them done again on wed and if they do not increase I will need to stop it altogether which is not what I want to hear, she is going to refer me to the maxo facial surgeon to look at my jaw, I'm in total agony and really don't want to miss my enbrel this Friday again but it's not looking good.

I will keep you updated.
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Date: 27.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

oh gawd! I'm sorry to hear that Lynn. I did have a similar problem when I first started the Cimzia but it did go up and my doctor told me that it usually sorts itself out. Fingers crossed it works out that way for you.
xx
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Date: 27.02.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi bsk, I am feeling a good bit better since i started the steroids, although i have to start reducing them next week so don't know what will happen then as i felt really bad in hospital before i went on them but it's great to feel almost normal even if it's just for a little while. Funny you saying about your wrists being sore, my right wrist is really hurting just now and it happened after i was on the phone to my sister in Canada for ages the other night, that happened the last time as well, so you probably have been doing too much, especially lifting kids up and doing the gardening. I have been so tired as well this week, i thought steroids gave you energy but i am actually looking forward to going to bed now, perhaps because i am sleeping a bit better I am so sorry to hear you are suffering so much with you jaw Lynn, it should eventually settle down, try not to worry too much about the white cells, they will go back up again, can they not give you something else to help with the jaw pain, i hope you will feel better soon. take care xx
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Date: 28.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Rhona, believe me, you shouldn't go back to feeling worse when you reduce the steroids. They have a cumulative effect, I think. However, if you do flare up again, just ring your rheumy consultant. They might put them up again for a few days.xx
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Date: 28.02.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies I'm not any better finished my antibiotic and I still feel as tho I've got an infection I'm waiting on my rhumy nurse getting back to me I feel awful
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Date: 28.02.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

You are having your time of it just now Lynn, try and get plenty rest and take things easy while you are feeling so bad. Perhaps you should see the doct again to make sure your infect has cleared in case you need another antibiotic Remember and tell the rheumy nurse how you feel and see what she suggests. My hand is badly swollen today and fingers feel very stiff. hope you feel better soon. Hope you are feeling better today bsk, remember not to overdo things. tc xx
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Date: 28.02.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Thanks rhona I'm back in bed been here most of the day I have an appointment tomorrow to get the blood's done and I will definitely be asking to see someone because I still feel like I've got the infection and I've finished all the antibiotics, the rhumy nurse told me to get back to her on Friday when I get the results to see if I can take enbrel again, but that won't happen if I've got an infection then I'll flare even more and that's something I do not want to think about, thank goodness my husband and kids are understanding or I don't know what I would do, you don't realise how much the enbrel has been helping until u come off it I was never pain free but I don't think I ever will be.

I will keep you posted and hopefully I will know more tomorrow.

Tc x
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Date: 28.02.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Good luck tomorrow Lynn, i hope the infection has cleared and you get to take the enbrel on Friday. After i took mine today my hand seemed to settle down so perhaps it is helping after all, although the steroids are obviously making a difference as well. Rest as much as you can until things settle down. Tc xx
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Date: 29.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Sorry to hear you are still feeling rough Lynn. Get plenty of rest and drink lots of fluids. Wait to hear how things go today. xx
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Date: 29.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

sorry,that meant to say I am waiting to hear.....!
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Date: 29.02.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies well this morning I woke up with a rash and spots all over my face and I still felt rotten so when I went in for my blood's I asked to speak to the Dr who examined me and sed I have a bad ear infection and that means more anti biotics I am really upset can't believe this I just feel so down at the moment I've recently fallen out with my mum and feel really low how much more do I need to suffer:( I hope you both are getting on better than me my joints are flaring bad I really do miss the enbrel

Take care x
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Date: 29.02.2012
From: Jeanette

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn

I have been following your posts and so sorry to hear about all you are suffering. I really hope that your GP can get you sorted so you can get back on your meds. Take care
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Date: 29.02.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, Sorry to hear that you need more antibiotics, an ear infection is horrible, perhaps that's why your jaw has been so painful. Try and stay positive, things will get sorted. I'm still not sure about the enbrel, i wakened this morning and my hip was really sore, it's eased off now, i just hate not being able to plan anything as i never know how i am going to be. Take care of yourself Lynn and I really hope you feel better very soon. xx
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Date: 29.02.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, I'm not surprised you are fed up but just hang in there. Get lots of rest, it's the only way to get on top of the infection apart from antibiotics. Sending a big hug your way!

I am due to take my second dose of Enbrel tomorrow. I must say my joints seem worse than last week but have done a lot lately. I feel so tired all time too. I know what you mean about planning things Rhona. It's hopeless but I'm trying to stay positive too.

love to you all.
xx
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Date: 01.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Well I started my new antibiotics this morning and I'm obviously allergic feel sick tumny doing loads of grumbling the taste is back up in my mouth I've to wait till afternoon and dr will leave me a new script things r just getting worse:(

Thanks for your kind words they do mean alot x
Rhona hope your improving and bsk hope your doing OK and get better with each injection x
Jeanette thanks for your words to this forum really does help and makes me feel better thanks alot x
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Date: 01.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Girls, I am thinking of you both and i hope you get the antibiotics sorted Lynn, sometimes that can happen with them, drink plenty water and as bsk says get plenty rest. You probably have been doing too much bsk, I have been so tired since i came out of the hospital, i actually look forward to going to bed now at night, i hope you start feeling an improvement after your jag tomorrow, look after yourselves. xx
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Date: 01.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi gals,

How are you getting on Lynn? Are you feeling any better tonight? Sounds as if you might have a similar bug to the one I had 6 weeks ago, infection but bad guts too. Took quite a while to clear up - antibiotics and rest I'm afraid! Boring, worrying and depressing all in one go. I really feel for you!

I caved in and phoned NRAS helpline this afternoon as I felt so shattered today I could hardly function. They thought it was active RA; the Cimzia finally leaving my body and the Enbrel not yet kicking in and suggested I ring my nurse.
This I did and am going for a steroid injection tomorrow after I have seen my father on his way home. Explains a lot and why the joints are flaring too.

You were right Rhona, doing too much (not in comparison with other people but for me!) Apparently,the more active the RA the less energy you have for other things. I was shocked today at how exhausted I felt only two hours after I got up. It helps to know there is a physical cause. I do forget how bad it can be.

I'm wondering if it is the same thing for you Rhona?

Onwards and upwards!
xx
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Date: 01.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls well I got a different antibiotic later on this afternoon and I've had 2 but in bed now so I will take 3 tomorrow I just hope this shifts soon and I have the added worry bout my blood's so hopefully they will b back tomorrow and it will give me an idea if enbrel will be continued fingers cross also I had a letter from the dla saying they we not going to change my award from low rate care any higher which exasperates me I can't do hardly anything for myself and they contradicte everything you write on the forms sorry for ranting hopefully tomorrow things will b better
Goodnight ladies tc x
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Date: 01.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

That's the last thing you needed Lynn! Can you appeal? Fingers crossed for bloods. Hope those antibiotics kick in soon.
xx
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Date: 01.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Try not to worry too much about your blood results Lynn, they will go back up, even if it's not tomorrow, glad you got different antibiotic, i remember years ago i got one that gave me agonizing pains in my stomach, hopefully this one will clear things up and you will start to feel better, just take things easy. I know what you mean bsk about the exhaustion,this last week has been really bad, i have never felt so tired in all my life and that is with steroids, i hate to think what i will be like next week when i start cutting them down.I hope the steroid helps you tomorrow, i got 2 into my knee last week in hospital and it has helped. Lets hope the next week or two brings big improvements for us all. Off to bed soon, sleep well. xx
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Date: 01.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Couldn't agree with you more! I'm off to bed too!
Chat tomorrow maybe.
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Date: 02.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Bsk & Lynn, I hope you are both feeling better today. I went to the hairdressers today and then to Tesco but i am absolutely exhausted now and my ankle is really sore, walking is still a struggle. Hope the antibiotics are helping Lynn and hope your jag today helps bsk. xx
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Date: 02.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

hi Rhona & Lynn,

Came home after hospital and collapsed into bed (this after popping into Gap to buy some trousers!) The fatigue is like nothing else, waiting for depo shot to work now! I empathize with you Rhona!

How are you doing Lynn?
xx
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Date: 03.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls I'm ok just really sore and run down I did feel slightly better with this antibiotic so fingers crossed my wbc was over 6 so way higher than last week but she did say if u have an infection your wbc will b higher, I so fed up right now and hurting like hell.

Hope u both are feeling better than me tc x
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Date: 03.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, glad to hear you are feeling slightly better, hopefully after this antibiotic things will pick up for you, just take it easy and stay positive. Hope you are well today bsk, i'm ok but have to start reducing the steroids on Monday. have a good weekend. xx
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Date: 03.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

I'm ok today thanks Rhona, still tired but hoping steroids kick in. You shouldn't feel an increase in pain when you reduce your steroids as it is a gradual drop. At least, I hope not.

Hi Lynn, hope you are feeling better with the antibiotics. I hope you can get back on enbrel soon. xx
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Date: 06.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls how's things with you both? My flare seems to have calmed down a little although my knees have been really stiff I'm still on my antibiotics finish them thurs so hopefully get back on it Friday although I was thinking I might have a urine infection so will need to put a sample in.

Take care x
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Date: 06.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, glad to hear your flare has calmed down a bit, hopefully when you finish antibiotics on thurs. you will feel better. I wakened this morning and my left knee was sore and stiff and my fingers were swollen, i took my 9th enbrel injection this afternoon and i seem to be a bit better now, perhaps it is helping a bit after all, i have just been taking it easy today. I hope you are feeling well bsk and finding that the enbrel is helping. speak soon xx
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Date: 06.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls, good to hear from you both. Lynn, don't you have to wait a bit after antibiotics to get back on Enbrel? My nurse said five days clear of them. That was for Cimzia though, so maybe it's different. Glad you are feeling a bit better.


Hi rhona, that sounds hopeful! Fingers crossed and all that!

I've got a nasty rash around both injections sites. Taken Piriton and will see what happens. Also, my wrist is very bad at the moment and shoulder too. Guess I'm feeling a bit of what it is like without the drugs as steroid hasn't kicked in yet.

chat soon. xx
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Date: 06.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi bsk, it is early days yet for you so hopefully you will feel a difference soon. Are you still on the oral steroids? I have to start reducing mine now. I haven't been so bad now with the injection site, i did read somewhere that it settles down after a couple of months. take care. xx
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Date: 07.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Well, two injections of Enbrel and I'm sure I'm coming down with a chest infection. Unbelievable. So much for 'you'll do better on Enbrel.' If only. Am so fed up!
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Date: 08.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

That's not good bsk, perhaps it's a good idea to get some antibiotics just in case and you never know it might not come to anything. I must admit i am getting so fed up with it all, i thought after 9 injections i would be feeling better but my hands are swollen and sore and my ankles are bad, i thought this was going to be a wonder drug. Oh well, we just have to struggle on. take care and hope you are ok. Hope you are feeling better Lynn and your infection has cleared. xx
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Date: 08.03.2012
From: marlene

Subject: Re: Enbrel, new thread, reply to Rhona

Hi, I have just been reading your posts. I have OA as most of you know, I am just sending you all a big hug and hoping you all get the results you want. Take Care Keep your chins up I know its hard when you are in pain. Love to you all and all my best wishes xxx
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Date: 08.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Thank you Marlene for your message and good wishes it is much appreciated. I hope you are keeping well and not in too much pain at the moment. It does help to have people like yourself who understand and care. will try and stay positive. take care xx
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Date: 08.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Thank you Marlene it does mean alot I'm just off the phone with my Dr I've to go down tomorrow and see him I still feel like I've got this infection and I have a dodgey rash on my face I'm so sick of the whole thing I've also calked my rhumy nurse to see what her take on this is but not heard from her yet I know what you mean about being fed up rhona.
Tcx
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Date: 08.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Am on antibiotics now Rhona, spoke to rheumy nurse who said to take them (have them at home on instructions of chest consultant.) I'm also going on half dose of Enbrel and being taken off epi pen because of injection site rash. Will be mixing my own with powder and water in future! Just chucked all spare pens in sharps bin!

Thanks Marlene and Rhona, and Lynn too, sorry to hear you are both still feeling rough. Rash doesn't sound too promising Lynn. Rhona, still might work you know, I hope so.
take care everyone. xx
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Date: 08.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

You are best letting the doctor see rash Lynn and see what he thinks and also get nurse's opinion, perhaps they haven't given you the right antibiotics to clear infection, it doesn't seen fair having all that to contend with but things will hopefully get better soon. That's a shame bsk that you are not so good either, i wish i could find something that would make us all better and had no side effects, i read in the daily mail the other day that they are working on a new drug that could be a great help and it is much cheaper, so here's hoping. take care xx
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Date: 08.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

We are all in a state aren't we lol! I saw that article Rhona but think it might be a while before it translates into a drug but I insist we are first in the queue!

Spent all afternoon sleeping on the sofa with the cat complaining for food. I'm putting her on a strict regime as she is getting porky and has got bad habits of snacking - habit I share unfortunately.

thinking of you!
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Date: 08.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

btw Rhona, how is the steroid reduction going? Is it causing you to flare?
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Date: 08.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

I know, if we don't laugh we will cry lol, the sleep would do you good, i could sleep round the clock just now. I'm not sure if it's because i've reduced the steroids but i am probably more sore this week, although to be honest i haven't felt normal in a long time so i think i might need to change drugs after the 3 months but then again perhaps a miracle will happen, although i can't see it now. I probably feel a bit like your cat just now all i am doing is sleeping and eating, i have put on a few pounds since coming out of the hospital but i had lost over a stone so don't mind. take care and chat soon. xx
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Girls, i hope you are both feeling a bit better this morning. My ankles are really swollen at the moment and they look awful, like they are bulging out at the sides, i can hardly get my trainers on, anyway i decided to check the enbrel information leaflet and one of the side effects can be swollen ankles so i am going to have to call the hospital tomorrow and see what they say. It also said to check with doctor if you are taking suphasalazine with enbrel and when i checked the internet it says it can interact with enbrel and put you at more risk of serious infection. I really am getting fed up with this now, anyway sorry to go on, will message later xx
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Date: 09.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Omg Rhona! That's the last thing you need. It makes sense that suphasalazine and Enbrel double your risk of infection and, to be honest, am surprised you need both, but what do I know? lol!

Let us know what the hospital says won't you? As to the sleeping and eating, that's pretty much what I'm doing these days too. And the weight gain , it's the biscuits wot done it!

Lynn, how are you doing today? Hope things are improving for you.
xx
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi bsk, i called the nurse at the hospital this morning and she said it sounds like oedema and to make an appointment with my doctor which i have done so have appointment for tuesday, she says it's not the arthritis and if it's pitting when i press it then i may need a water pill. This happened a few months ago when i was on anti-inflammatorys and when i stopped them my ankles went back to normal so i think it could be one of the tablets that i am on, the nurse didn't seem to think it was the enbrel. I think i might just miss it on tuesday and see if there is any improvement, i also asked about the suphasalazine but she said it's usually ok to take with enbrel, it does make you wonder though. Are you feeling any better today bsk? i hope your infection doesn't come to much and i hope you are feeling better today Lynn. take care xx
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Date: 09.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Could be a side effect of a drug. Is there anything in the Enbrel patient leaflet about swelling ankles? It does seem a bit coincidental.
I feel rubbish today, spent most of afternoon in bed with a temperature. Rats!
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Poor you, take it easy then and get plenty rest and drink plenty fluids to flush infection out. It does say in the leaflet to report any swelling in face, hands or feet but when i called the nurse she asked when i pressed it if there was pitting and i said yes so she didn't think it was the enbrel she said she thinks it's oedema.I was also given omeprazole to take before steroid and it says it can cause swelling although it's between 1-10 in 1000 people, i was also taking this when i was taking the anti-inflammatorys so perhaps is was that and not the anti/infl. that caused it before or maybe the MTX, i really don't know. I am going to miss out the omeprazole for a few days and see and if still swollen i will miss jag on tues, it's probably not right that i should be self diagnosing but what else can i do. Hope you start to feel better over the weekend and hope Lynn is doing ok. take care xx
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Date: 09.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Rhona, don't miss out the omeprazole without talking to your gp as steroids can seriously damage your stomach. I got appalling heartburn before I was given a stomach protector,thought I was having a heart attack!

Can't you phone your GP on Monday to get some advice over the phone?

xx
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

I suppose it is unlikely that is is them so i may just keep taking it but it so annoying having feet that weigh a ton and finding it difficult to walk. my GP is not the most helpful, i am actually thinking of changing doctors. xx
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Date: 09.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Evening ladies my goodness we r all having a time of it just now I was just reading back the post there and I can report that I'm no better either I went to my Dr and have been given my 3rd course of antibiotics:( I'm not impressed I can tell u my rhumy nurse called me today but says I am unable to get anything not even steroids or steroid injection because I have an infection I find all this hard to believe I came off the phone in tears I have a rash all over my face and chest and noone knows wot it is I have been in bed most of this week I am so fed up right now so I have to go to Dr on Monday and have my ear syringed then back to see him Wed to see if ear is better and how the rash is it's just never ending just now at 35 I should be getting my glad rags on and out partying but instead I'm in bed and cant even b bothered putting the tv on. Sorry for the rant but I needed to get it off my chest.

Rhona and bsk I hope u have a good weekend and are well tc x
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Date: 09.03.2012
From: Jeanette

Subject: Re: Enbrel, new thread, reply to Rhona

hi Lynn. Rhona and bsk

Really sorry to hear how poorly you are all feeling. It sounds like an absolute nightmare.

Can I ask a question as I spotted something you were saying about Omprazole. Have just had my first dose of MTX 10mg sunday just gone. I am feeling well but absolutely full of wind, burping and bloated, food is taking time to move if you know what I mean. I had H pylori about 8 years ago and was hospitalised with it so I am thinking I most probably need something to protect my tummy I have a GP appt on Tuesday but have read Omprazole can affect MTX or do you think she will prescribe a different tummy protector.

Sending healing hug to you all
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, That is such a shame that you are suffering so much, no wonder you were in tears, i was the same in hospital, they thought i had an infection because of the very high inflammation markers and they wouldn't give me anything until the blood tests came back clear then i was given the steroids. I really hope your infection will be cleared after this course of antibiotics then you can get something to help with the pain etc. then you CAN get your glad rags on and go and and have fun. look after yourself. xx
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Date: 09.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Jeanette, I didn't realise that MTX could be affected by Omprazole, after reading your message i read a bit about it on line and it does say that can be the case, seemingly it makes the MTX more toxic, another article said they are not sure if it affects R/A patients as they take smaller amounts of MTX although still very worrying. If you have appoint with doc on tuesday i would wait and ask him what he would recommend that you take, do you remember and take the MTX after food? let us know how you get on at doct. take care xx
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Date: 09.03.2012
From: Jeanette

Subject: Re: Enbrel, new thread, reply to Rhona

Thanks Rhona

Thats what I thought about the 2 medications. I know my GP although great I do n ot think she knows a lot about RA as she had to search online about the CCP test she said she had not had to order one for a year. Yes I took the MTX half an hour after a big meal. Had a little tummy pain about 2 hours later but have just been left with this burping after I drink and eat and bloating. I feel well in myself so pleased about that just discomfort. Will let you know how I get on, want it sorted really as after the next dose I go up to 15mg.
Take care
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Date: 10.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Jeanette & Rhona, I was on the two together, no problem with it all and the hospital pharmacy passed it as ok. I didn't have higher blood results or any of the symptoms of interaction. One good thing about being on Mtx is that you get monitored regularly so any problems show up quickly. However, you are right to check with your doctor or pharmacist.

Lynn, sorry to hear you are feeling so rubbish still. I was a bit like you on Cimzia, three or four antibiotics in a row. Hopefully, I won't be as bad on the Enbrel when they reduce the dose to 25mg. Is that a possibility for you? Might be worth asking the question. As to the rash, are they sure you are not allergic to Enbrel or one of your antibiotics? Hope you feel better soon.xx
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Date: 10.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies I'm still in bed in terrible pain but I will muddle through I'm sure my right wrist is agony the Dr isn't sure whether it's allergy to meds because I've been on so many so he said to see how it is in couple of days x
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Date: 10.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

stay strong Lynn, you will get there. do you have a splint for your wrist? i'm not feeling good today either, let's hope better days are just around the corner. take care xx

Thanks bsk for your reply, that's quite reassuring to know. xx
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Date: 10.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Thinking of you both.
xx
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Date: 10.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

I do have splints rhona but my right wrist is just to sore and swollen to put it on I have a stretchy bandage on it.
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Date: 11.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls, how are you doing? I'm a lot better today and managed to get out into the garden which was nice.
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Date: 12.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Glad to hear it bsk, i do hope this is you starting to improve. I've not been too good today, very sore and stiff, especially my hands and feet but at least the swelling has gone down in my feet. I noticed that the steroids that i have are gastric resistant so i thought i would miss the omprazole for a couple of days and see if they could be responsible for the swelling and it looks like they have been as the swelling has gone, i will call the pharmacy later and see what they say. I hope you are feeling better today Lynn. xx
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Date: 12.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

That's interesting Rhona. You might well be right.
A word of warning, even the gastric resist steroids can cause problems so do check that as well.

It seems it is taking a very long time for the enbrel to get into your system. Interesting, too that I've recovered very quickly from an infection that normally would have laid me low for a couple of weeks, which is what I was told would happen.

Lynn, are you ok?
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Date: 12.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies i hope you are both ok and not suffering to bad im still bad very sore can hardly get out of bed mum took 2girls to school today but ive still gor my wee boy here he isnt very well his twin sister had a bug all weekend! More bugs lol im getting my ear syringed this afternoon then back to dr on wed the rash on my face is getting worse im not really sure wots causing it cant see it being the antibiotics because ive had 3different types surley the enbrel is out my system the on call drr thought it could be a staph bacterial infection? Never really heard of that on a brighter note my lovely hubby and kids got me an early birthday/mothers day pressent a samsung galaxy tab it is fantastic great to use x
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Date: 12.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi bsk, that's great that you have recovered from infection so quickly, fingers crossed that the enbrel will get to work soon for you. It's hard to say if the enbrel is helping me or not, to be honest i would have expected to feel better than i am, i read it helps over 70% of people, i may be one of the unfortunate ones, I have an appoint. at hospital next month so if no better then i would expect to get different drug. Hope your ear feel better after it's syringed Lynn and hope the rash clears up soon. I guess it will be colouring books and TV today for you and your wee boy, i hope he is better soon. When is your birthday? have fun using you new galaxy tab. take care and get better soon xx
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Date: 13.03.2012
From: lynn

Subject: Re: Enbrel, new thread, reply to Rhona

Hi ladies well i went down to have my ear syringed and they couldnt get it done was very sore because i have infection in the ear been told to put almond oilbin again for another week, then then then dr came in because the rash had got worse he has taken me off the antibiotics to see if the rash calms down i just wish they would make their mind up because he said once my ear gets done next week i might need another antibiotic. Why can nothing be simple im so fed up :-(
I hope u both are keeping well today xtc
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Date: 13.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Lynn, That's a nuisance for you, the almond oil should help to soften it, i always heated it up a bit before using it. That is a puzzle about the rash, it does sound like some allergy. It's never ending isn't it. My stomach has been funny for the last day or two, i'm in two minds whether to do my jag today or not. Hope you are still feeling better bsk, take care xx
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Date: 13.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi girls, You are having a tough time, both of you. rhona I wouldn't do the injection with a dodgy stomach - have you called your nurse? Lynn, my surgery doesn't believe in syringing ears! Must be very painful if you have an infection in it. Hope it clears.

I'm ok, just extraordinarily tired. Had a surprise visit from overseas friend and did too much. Really paying for it today.

Hope you both feel better soon.
xx
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Date: 14.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Girls, Hope you are both feeling well today. I am ok athough still very stiff, hoping it will wear off as the day goes on. I have been so tired though,at least i am sleeping at night so that's a bonus. take care xx
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Date: 14.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona

Hi Rhona, You sound a bit better today though I know what the stiffness is like as it's beginning to return with me, in my knees. Good that you are sleeping. Do you find however much you sleep you still feel tired?

I've got a temperature again today, so don't think I'm over my bug thing. Rats!

Lynn, how are things with you today?
xx
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Date: 14.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona

Hi bsk, I hope your infection isn't coming back, try and will it away, you have been doing a lot over the last day or two so perhaps you just need a good rest. I have been in my housecoat all day, i don't understand this disease at all, last night before going to bed i actually felt quite good and then i slept for around 9 hours until my dog wakened me up barking this morning, i could have slept all day.i was really stiff when i got up and have been like that all day. By the way my stomach seems ok now, so i did the jag yesterday and thought it was finally starting to work and then i was so disappointed to waken up this was again. anyway we just have to struggle on, look after yourself. Hope you are feeling better today Lynn. xx
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