Posted , 5 users are following.
Hi Everyone,
I am newly diagnosed when I saw the consultant in April he decided because I couldn't have methorterxate because of other meds I am on he tried the other DMARD's available but I have been unable to tolerate any of them, has this happened to anyone else and if so what alternatives did the give you.
L.
0 likes, 8 replies
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Guest linda51222
Posted
What other DMARDS have you tried? It's only been a month.
elspeth97587 linda51222
Posted
Dear Linda, I am really sorry you can't tolerate the other medications. This has never happened to me but I am replying so you know your post has been read and I am sure someone will be able to help.
I must ask how you have tried the other DMARD's in the space of a few weeks as they take a little time to work. Side effects can take a little while to subside.
Best wishes, Elspeth
linda23834 linda51222
Posted
Hi Linda, sorry to hear the DMARDs haven't worked. I also wondered what you have tried as normally it takes months to try different medications. I tried at least 3, but that was over 18 months. I to didn't tolerate them and after being asked to try for this amount of time was offered Benepali. I hope they can find one medication to help.
linda51222 linda23834
Posted
Thank you all for your prompt replies, I didn't make that very clear did I.
It was realised I might be difficult to treat so have been monitored closely by the RA nurse. I have had autoimmune problems for about 17 years and was already under Rheumatology when they discoverd the RA.
I have Sjogren's Syndrome, palindromic Rheumatisim and Fibromyalgia and my immune system is very intolerent of a lot of meds, including all analagesia. They new I couldn't have methotrexate so tried Leflunomide sulfasalazine and a another, all with the same response I was very prepared to suffer the side effects until my body got used to the drugs I just want to feel better, but my immune syatem spat them out almost instantly. I also Have AF which means I am on a blood thining drug that I have to be careful with, I can honestly say I am not on too much pain it the weakness and trembling in my arms and legs and the feeling like its my first day up after flu all the time, I always the best people to ask for answers is those that suffer with the problem themselves, that's why I turned to you all.
Sorry to be a pest
L.
Gloria814 linda51222
Posted
Linda, you are by NO means a pest. Others are just trying to understand where you are at in this point in time and what meds were given. Medications do take a fair amt of time to work but from your ans. we see you have been able to tolerate very little. Do you take a med for palindromic and tolerate that ? . I am fairly new to all this so can't be very helpful. I hope you have good support from your medical team and family. Keep us posted on how you are doing
best wishes, Gloria
linda23834 linda51222
Posted
Hi Linda, please don't think you are a pest, after telling us what has been happening, I feel sad that you haven't had any relief yet from your symptoms. It sounds very complicated with all your medical problems. I certainly aren't qualified to advice you. If you can't tolerate oral meds, have injections been mentioned? I was advised that the feeling of fatigue was part of RA. Plus you can have side effects with the meds. Probably you need to talk to your own GP. Or the Specialist at the Hospital. I sincerely hope you can get some help, unfortunately it all takes time. Take care Linda
linda51222 linda23834
Posted
Hi Linda & Gloria,
Thank you both for your kind words of support, In answer to your question Gloria no I have not been medicated for the Palindromic for the same reasons but as that does what it says on the tin (comes and Goes) its easier just to ride with it while it is in a flare up.
I have been in touch with the RA Nurse and she is going to try Leflunomide again at a very low dose although it will take longer to have any effect it might be the way to go, she is also going to ask the consultant if while I am doing that if I can have a low dose steroid just to dampen things down.
Once again thank you both so much I will let you know how it goes,
I hope you are both as well as you can be.
Best wishes Linda.
linda23834 linda51222
Posted
So glad you have been in touch with your RA nurse. Let's hope you get some relief soon. Steroid injection always helps me for a few weeks, so hope the Consultant agrees you can have it. Fingers crossed. 😊