I've had Fibro for 25 years , and last year found out I also have RA. For the last year I've been working with my doctor to get my RA under control. Started out on MTX , folic acid, and prednisone . I stopped the prednisone after the MTX started working. It was helping a lot with my pain and stiffness. Just had a problem with feeling really tired, real heavy and unsteady ! About 2 months ago I had to go off the the MTX because it was causing liver problems. I was off for a month, and was just taking prednisone and tramadol until my liver recovered .And was feeling so much better While I was off the MTX .So much energy and not having that heavy feeling. Then I Started on Leflunonide and about a month on it I started feeling bad again with the tired and heavy unsteady feeling!! I couldn't take it any more and called my doc . And he had me get some blood test to see what was going on. He told me that the test showed that I have Epstein-Barr Virus . And that I needed to go off the Leflunonide so my body can fight off the virus!
He said that most people have this virus and that taking the RA meds that lower our immune system can bring it up in some people! So I'm thinking that the MTX was causing the problem to start with. And while off it for that month I got feeling better because my immune system was fighting off the virus! Then when I started on the new Leflunonide meds it came back . So right now I'm just taking the the prednisone and tramadol . I'm getting another blood test in a month!! And not sure what the doc is going to do then! Has anyone else had this kind of problem before???Thanks , Gingeq
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Welcome to the group but unfortunately I don't have the knowledge to help you, I'm sure someone will be able to help, apart from that please enjoy the site.
Hi there and welcome. I don't know anything about Epstein Barr virus but I have had a similar problem with not tolerating Sulfasalazine, MTX and Hydroxichloraquine and I do understand that feeling of just not being at all well when taking DMARDs. All these drugs work very well for my RA so it's frustrating when, as time wears on, each drug seems to make me iller than even the RA does. I'm not taking anything just now apart from Amitriptyline and am feeling generally better in myself. But I've stopped these drugs before and recognise the feeling tired and achy with lots of burning and tingling in my extremities but no joint pain yet - it's been three weeks since I last injected MTX now and I too am worrying about what my rheumy will suggest when I see him two weeks tomorrow. I think Leflunomide is next, my fourth DMARD, but I'm not very enthusiastic about trying it I admit. Twitchy
Thanks Twitchtoes,, I'm sorry about all your problems with your RA and the meds you've tried!! I hope all goes well with any new ones you may try!!
I'm feeling the same way about taking anything else! I'm thinking maybe going off everything for a while and see how I do! I have to go back in a month for more blood test to see if the virus is gone. I just don't want to get back to how bad off I was a year ago! I could hardly get out of a chair or walk very far!
I guess I'll make that decision after the next blood test and talk to my doc!!Thanks, Gingeq
Last time I came off all meds I lasted a few months and then ended up on Pred for a month followed by Hydroxy for four months. The RA crept up on me so I only realised I was in a flare when someone explained to me that I was. I had been expecting the all out pain it started as not this flu like ache.
This time it looks like being the same and I'm trying not to lose my resolve to stay off meds - at least until my rheumy apt two weeks today. It could be much worse though and would be if I was still on MTX!
If you come off the Pred then you might flare - it can give a false sense of security and doesn't actually stall the disease in the way that DMARDs do. It works best for me for short breaks only as I have found it harder to stop the longer I take it for.
Hi Twitchy- have you made the decision to stay off the meds until you NEED to go back on them because the side effects outweigh the actual benefits of the MTX? My reason for asking is because I go back on the 22nd and am sure she will start me on the MTX injections. Very reluctant to start it because my system normally always rejects any chemicals, but at the same time I can tell it is getting worse. I was dx'd a little over a year ago with RA/ Fibromyalgia all in the same day. I am currently on 400mg of Plaqunil and at first it really helped especially with regaining my energy back.... not I am finding the low energy is coming back as well as knee pain which I did not have before along with more wrist, ankle and finger pain. So...
Hi proudmom, well the MTX worked well for my pain and stiffness, just the side effect of feeling really tired and no energy while on it was the big problem for me. But, I'm thinking now that may have been from the virus it probably brought while taking it. I wasn't tested at that time for the virus. But had to stop because it was causing my liver problem.
Then after starting the new med Leflunonide I had the same side effect , so my doc decided to run blood test and found the virus. And also my liver had a little raised lever from before I started. That could be raised by the virus!?
So I'm not sure what , if any DMARDS I'll be even able to take that won't raise my liver levers or bring on this virus again! I'm thinking my doc wants to get this virus gone and then try the Leflunonide again!
Thinking that the MTX caused the virus and it wasn't gone before starting the new one.
I'm hopping it doesn't , time will tell !
I know how you feel about taking these DMARDS , but if your RA is bad like mine , we have to take something . Just being able to get out of a chair and walk well is great.
But like you the feeling so tired and having no energy is not good either!!
So my wish is that this virus goes away and I can go on the new med and not have that tired and no energy feeling . That would be great, and that it won't affect my liver!!!!
I was just thinking that maybe you could talk to your doc about getting checked for that virus, Epstein-Barr Virus! That could be that you have it also! Just saying!!
Hi Proudmum. To answer your question I have made the decision, with support from my health team, to not go back on MTX. I have tried it twice - 9 months on tablets, a year on injections, a year with Hydroxichloraquine and then recently at a lower dose (10- 12.5mg) on it's own for three more months after an 8 month break. I'm okay at first but then the nausea and a horrible taste start up after a few weeks and then the stomach cramps and the runs. The horrible taste is consistant - I have it whenever I take MTX by tablet or injection. Plaquenil/ Hydroxy didn't do much for me at all when taken with MTX for a year but on it's own it did seem by far the best but then my face started to swell and then my lips too and I had horrible itchy rash over my face too. Sulfa - well after three weeks I ended up in A&E with neck and ear swelling and a light sensitive rash everywhere. So I'm really useless with drugs is all. My body just says no. I do take Amitriptyline and Levothyroxine with no side effects and I also can tolerate pain meds and Naproxen for short periods.
My thinking is that I've tried three DMARDs - two of them several times now. I have been told that I won't qualify for anti-tnfs unless the swelling comes back in my hands as it was when I was diagnosed. But my ESR usually soars after a while off DMARDs. So I think I have decided to stay off all drugs this time until it comes back, if it comes back at all that is, in my hands. I just feel that my rheumy expects me to keep going on these drugs until my RA gets too bad to be managed on them alone. But as I have failed to tolerate three over three years now I feel enough is enough. But like you I have a very sore knee. No sign of swelling yet but it is getting worse everyday. My rheumy apt is two weeks today and I'm not sure what he will say but I'm resolved not to torture myself on any more DMARDs anyhow. If it gets really bad over the next few weeks then I can always ask for a steroid injection when I see him. This is my thinking anyhow.
Hi, is that Hydroxychloroquine ? My doc added this to my MTX when I was on it. And it caused me stomach upset. And I stopped taking it.
Right now I'm taking just 2.5mg of prednisone once a day and Tramadol 250 mg one or twice a day. I stopped the Leflunonide 3 days ago after only being on it for a month. So I'm sure it hadn't really even started working much yet.
I've noticed some pain and heat starting in my knees again and wrist. I'll have to see how that goes. I may have to go back up to the 5mg of prednisone . I'm going to try and not until my next blood test next month because a higher dose won't help with my immune system while I'm trying to recover from that virus!:((
So I'll have to see how it goes till then,, I'm afraid it may get bad, just from how it feels right now. Thanks for your advice and good luck!
Sorry you are having such problems. I'm not sure that prednisolone is a whole lot better than the other meds though - I know I can often end up picking up bugs while I am taking short courses of pred, as it does seem to also reduce my resistence. I guess you just need to try it though and be guided by your doctors advice.
Hi Earthwitch!! You are so right about the prednisone , I just looked it up and it says that it can lower our immune system also!! My doc did say to stay on it for right now with the tramadol. I am taking a low dose of 2.5 mg a day now!! So maybe that's not to bad!
Thanks for replying back to my post!! And all your help! Gingeq
My rheumy will not prescribe me prednisone here in the US.. she says that it breaks the bone down and causes even more problems. I go on Tuesday and am ready to ask about 15 questions about the MTX and am not leaving until she answers them.
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