Hi,

I was diagnosed with RA 3-4 years ago and recently joined nras. A couple of questions.

I was initially put on methotrexate (20mg weekly + 5mg folic acid) which kicked in after 2-3 months and worked very well. In fact the RA seems to have gone into remission for a good year or more now. However, two months ago my neutrifil count dropped below 200 and I was told to stop taking methotrexate until the count had risen about 200 again. Since then I have not taken any medication except for the folic acid and daily calcium tablets, bar a single dose of MTX as the result of mistaken advice by a stand-in GP which was rescinded a few days later by another GP. I am back on weekly blood tests and the neutrifil count hasn't yet settled and is still bouncing around each week from 160-220 or so.

Does anyone know for how long one can lay off the methotrexate and whether, if the RA is in remission, is is OK not to take anything? I have tried to get some advice from my local GP's surgery but to no avail. The GP I saw there a few weeks ago was unable to offer any useful information, in fact he was unable to tell me what the last report from my local orthopaedic institute (I am asked for a check-up annually) actually meant, claiming he had never heard of terms like DAS CRP 1.21 or DAS ESR 1.36. Nor did he offer to find out. I am wondering whether there are any other avenues it might be worth checking. For example, am I meant to wait until the neutrifil count has settled above 200 for a decent while rather than just exceeded it once?

Any suggestions would be most welcome.

Welcome Mark,

Sorry your have RA but welcome to the forum. You will find this most useful.
AS Jean said Lynn will be good to give you the correct info. Do you have a Rhummy Nurse as she
would be a good bet to contact.

I am Rose from Somerset aged 56 had RA for 2 years and after been on mtx (came off
as liver upset) just started last week leflunomide so fingers crossed.

Hope to hear from you again soon

Hi Mark

Welcome to the forum! I'm Lyn, as previously referred to and yes I do know all about Methotrexate, neutrophils and neutropenia!! I really wish I didn't believe me!

Methotrexate is a very toxic drug which works well for keeping RA under control (in some people) but not so good when it knocks your immune system for six. Methotrexate can cause the neutrophil count to drop. Neutrophils are the good guys that go about gobbling up the 'bad b*****s' that make us ill. Consequently no neutrophils = no immune system = lots of infections. To be left in your position with neither adequate recourse to someone who can help and the very high risk of developing a serious infection is not satisfactory.

I have developed neutropenia twice in the last four months. My methotrexate was stopped in March and the neutrophil count started to pick up but then my consultant decided it was time to restart Mtx. Immediately the neutrophils started to drop, Mtx was stopped again and the neutrophil count stands at about 160. I have seen a haematologist who has advised that it may be necessary to do a bone marrow transplant because of the damage caused by the mtx. My immune system may remain compromised without it. I have been on Mtx, on doses between 10-15mg, for ten years and this has been the first sign of a problem of this nature. I do however have concerns about Mtx and brain trauma but that is another issue.

If the RA continues to be in remission I wouldn't worry about medication. Your blood test results will show up any returning inflammation and it can be dealt with at that time. Folic Acid is given with Mtx to combat some of the side effects ... you don't need this when not taking mtx, it does nothing for RA! Just take the calcium for now!

First stop for you is your Rheumatology nurse. If you don't have one (the details should be in your patient book that you keep your blood test results in) phone the consultants secretary and explain the situation. They should either arrange an appointment to review you or check your results and refer you on to someone who can help with the neutropenia. I don't want to frighten you BUT it could be a very serious condition please take some immediate action and let us know how you go on. Also as Jenni says, see if you can change to a different GP. Whilst they may not know all the ins and outs of RA they should know about ESR, CRP and DAS, the first two are used regularly in medicine!

Take care and keep posting.

Lyn x