hoping for a miracle

hi i am currently taking sulpha salzine which i have been taking for 6 months unfortunately i cannot have methotrexate due to a bad reaction in the first few weeks . i am in a worse state now than i was before starting meds and was wandering if anyone has been put on injections for their ra i am at the end of my tether with the constant pain , i am considering asking rheumy for enbrel as ive heard it is much more effective any comments would be gratefully appreciated

15 Replies

  • Hiya bushwack. It really sounds as though you're struggling at the moment. So if I understand it you're not taking any DMARDs in order to try & control the RD? If that is the case I don't think you would be considered for enbrel before having tried at least one other DMARD, though if you had a severe reaction to MTX it may be a consideration, only speaking to your Rheumy & asking which direction he thinks is best for your continued treatment can that be determined. It doesn't come without side effects either so not the miracle no problem drug either. It does work well for many as it is a biologic but only those who have tried most everthing else first & still remain poorly controlled from my understanding.

    If you're only taking sulfalazine I would think he'll try other drugs before making the desision to go this route. Was the reaction to MTX too bad to even offer trying injections, upping your folic acid or even reducing or splitting the dose? I only ask as it is a particularly good drug at controlling RD particularly with the help of NSAIDs & maybe other meds as it does for me. You don't say if another DMARD was suggested but it's unusual I would have thought if one wasn't & think maybe that would be the next step your Rheumy will offer.

    Continual pain is wearing I know, I'm going through just short of hell at the mo though mine is seemingly due to OA but it does sound as though sulfasalazine alone isn't doing enough to help contain your inflammation & not having a DMARD won't be helping either so if your Rheumy appointment isn't imminent maybe a visit to your GP to see if he can prescribe something additional to help would be be the best thing.

    Hope you get some help soon & you find the treatment that you can tolerate to control you.

  • I was the other way round to you and tried Sulfa for three weeks before having a severe reaction that meant I couldn't try it again. MTX I managed for nearly two years plus Hydroxichloraquine. Both of these did really make a big difference to my RA/RD but I couldn't tolerate either drug in the end as side effects were just to severe to bear. I don't know about Enbrel as I haven't yet qualified for anti-tnfs/Biologics and equally wary of them.

    Some people do seem to get fast tracked to them after only trying two DMARDs (I believe one has to be MTX for at least six months). But when I tell my DMARD history I include Sulfa because not being able to tolerate a drug is the same as it not working - depending how severe your intolerance has been of course. For example If you came off it for a bit of nausea or a small rash then the rheumy might feel you didn't give it much of a chance but if it was a severe reaction then that's another matter.

    I hope you do meet the criteria for biologics if this is what you would like in order to get out of pain and get the disease controlled. I took Methotrexate by injection for 14 months and I definitely prefer injectable drugs to pills because I've become a bit phobic now about the latter!

  • I am on them as well also Celebrex which is an anit inflamatry drug.

    I was given as 'depo' injection a few weeks ago they last about 3 months the improvement has been amazing.

    My RA nurse on the helpline offered to do it at the hospital but also advised I could have it done at the GP.

    Hope this helps

  • Poor you.

    I was on Methotrexate, hydroxychloroquine, Sulfasalazine and Prednisilone . Had to stop HXCQ because of eye problems. Tolerated the other two, but the RA was still not under control. I got onto Enbrel within ten months of starting treatment. Too soon to say what difference it has made because Prednisilone might be masking it, but I am optimistic. I'm feeling a lot less drugged on Enbrel, though I'm still on a lower dose of MTX. Some rheumatologists are more holistic than others, but I think that side effects are such an important consideration.

  • I have recently started on Enbril, 5 weeks ago, to actually get on it I was on triple therapy for just over a year and a half, which is mtx inj, hydrq, and sulph, still on all 4 at the moment, sounds like you are going through a rough time, but like no more heals says, I am surprised your Rheumatoid hasn't introduced another dmard or tried you on mtx inj which pretty much bypasses most side effects with the help of more folic acid, which I take 6/7 hope you get some relief soon, If it were me I would be on the phone to my rheumy constantly, hope you are sorted soon.

  • I don't like to contradict you here Ian as I do agree that injections are a good alternative to pills for some. But I have suffered the same side effects on MTX injections that I suffered on the pills. The main difference for me is that the MTX is more effective for me at lower doses because it bypasses the gut. And I know that many do find the side effects much less of a problem on it by injection - but just so you know this isn't always the case.

  • Hi twitchytoes the point I was making to bushwack was that she hasn't it seems been offered mtx inj, If she has then she knows if she will have reactions, if she hasn't had mtx inj then she won't know, as I had bad side effects also until I went on inj, something which her original post mentions that she wants to try, no contradiction just crossed wires :) hope you're well

  • Oops sorry about crossed wires Ian :-)

    I too wasn't sure whether Bushwack meant injectable MTX or other drugs that are only available subcutaneously such as Enbrel perhaps? No worries either way - I just didn't want people who try injectables to expect the world only to be sadly disappointed as I was in the end, when the lousy side effects returned. I know most people do much better when they switch to injected MTX so I'm just in a small minority. Silly old body of mine :-(

  • Hi - yeah it's a real struggle isn't it? I had bad side effects with methotrexate too, that was the first drug I was put on after being diagnosed around January this year. At that point I told my Rheumy I didn't want to take all these toxic drugs and would try managing on Ibuprofen for a while. Mistake! Inflammation def getting worse, pain really bad, so was put on sulfasalazine next - within 2 days had diarrhoea, which as I live alone and toilet upstairs, was awful. Stopped that one too, so Rheumy said try hydroxychloroquine as it's supposed not to cause many side effects. Took that for about 6 weeks, had lot of headaches/migraines but prepared to persevere......then 2 weeks ago, woke up covered in a rash!! Exactly like measles. Rushed to GP, he wasn't sure what it was (reassuring!), stopped hydroxy anyway and did myown research online till I found a pic of rash caused by hydroxy - yup, that's the one! Rash got worse before it got better, took 9 days to go completely. The GP I saw that day said stop Ibuprofen, try Naproxen, a stronger anti-inflammatory. I didn't try it until rash had gone, in case it too caused side effects. The first day I took Naproxen was great - the least pain I've had in over a year - it's my feet that are really, really badly affected. Wonderful, I thought! Wrong. The next day and every day since, pain just as bad as ever. What now??? Waiting to hear if I can see my Rheumy before next due date, and I haven't a clue what to say to her...... I seem to have violent reactions to the "proper" RA drugs, and no doubt biologics would be the same, maybe worse?? I don't have much pain/inflammation/stiffness anywhere except my poor feet!

    I'm actually thinking of being tested for food intolerances, as I keep reading that "inflammation starts in the gut" - but please don't stop YOUR meds on the strength of that. I really hope that if your Rheumy switches you to a biologic, that it'll be the right one and then work quickly for you. All the best.

  • That is interesting because I had a very similar reaction to Hydroxichloraquine - never come across anyone else who has had this! I feel just the same way as you as I've had severe intolerances to MTX and Sulfa as well and am really apprehensive about what my rheumy is going to advise when I see him this coming Friday! I feel okay just now apart from my knees and feet which are usually a bit sore and achy whenever I have to come off these drugs.

  • I too, am on sulfasalazine because I can take nothing else due to my liver function tests. My rheumy also gives me steroid shots every three months, which help a lot. Recently I began to clean up my diet, eating mostly lean protein and veggies and a bit of rice now and then. Not eating bread and cereal was is very difficult, but has really cut down my inflammation. I also take a supplement called Curamin by Terry Naturally for the pain. Overall, I feel so much better, that it is amazing. I believe that diet is the key to this disease and eliminating processed foods is a giant step forward. I wish you the best of luck.

  • I agree totally about keeping on top of things through diet and exercise - these have worked well for me too over the past three years since my RD started. However steroid injections take a toll on the body too and can stop working eventually I believe so it would perhaps be hard to tell what is down to healthy diet/ elimination of certain foods if you are also having steroid injections?

  • Thumbs up to Enbrel. I have been on it since 2012 and it gave me back my life. I am very happy on it. Like you I cannot take Methotrexate as it made me feel ill so at the moment I am just on Enbrel and I have recently had a steroid injection.

  • Thankyou all for your replies , its really helpful to see other peoples advice etc . I was originally taking mtx tablet form until a really bad reaction so was taken off them and put on sulphasalzine and hydroxy unfortunately due to another reaction i had to be taken off the hydroxy so was then left with just sulpha and arcoxia which i have been taking quite a while but with no relief from pain in my feet , knees, hands . I feel as though i am worse now than i was when i was first diagnosed ,which dont seem right to me .The reason i was wandering about injections was i know someone that has recently gone onto mtx injections and is on top of the world and i suppose i wish i felt like this . Ringing the rheumy nurse tomorrow first thing ,, x

  • Right, a little more clear now. Sulfasalazine is a mild immunosuppressant, in fact if can be used in pregnancy I believe, & as such isn't as effective as HCQ or MTX in more aggressive forms of RD. Arcoxia I have experience of (90mg) & for me has been a good NSAID but it's possible without one of the stronger DMARDS won't do the same job at controlling you as it's fighting the inflammation that the sulfa isn't, if that makes sense (v tired now). This is probably why you're feeling worse as the disease is progressing without a more effective or stronger DMARD.

    Injections are in my opinion much better than the tablets, far fewer side effects & I am now controlled taking 15mg & 6 folic acid a week plus my other meds. If you're willing to try injections I would have a talk with your Rheumy nurse about it when you ring her in the morning & see if she thinks this may be an option for you. She'll hopefully give you advice as she possibly knows just how the tablets affected you & will be able to help more knowing your history.

    Let us know how you get on. x

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