Hi

I've not posted on the forum for ages! - it's been a roller coaster of a time.
I'm just wondering if anyone else has had treatment for persistent neutropenia - low neutrophil levels.

My history is that I was first diagnosed with seronegative RA in 2008, and over the years I have been treated with Methotrexate, Sulphasalazine and Leflunomide. After a while on each of these drugs, my neutrophil level dropped. I then moved on to Enbrel, when I developed a skin rash. After a second attempt at Enbrel, my neutrophils dropped again. At a third attempt this July, all seemed to be going well, until last week when my neutrophils dropped to 0.99. I had had an appointment with a haematologist who arranged for me to have a GCSF injection, following which I felt dreadful but my neutrophils shot up to 9.

I've made this as brief as possible, but probably haven't given enough information! I'd love to hear from anyone who has also had a neutrophil problem, how it's been handled by the rheumatologists, and how things went. It seems as though I can't tolerate any of the RA drugs, and I just wonder what comes next.

I'm feeling at the end of my tether ......

Mylo

Hi Mylo,

I`ve been on all the drugs you mention, but none of them affected my neutrophil levels, so I can`t really answer your query. The best person would be Lyn, if she looks in, as she had all sorts of problems due to low neutrophils. She might be able to advise.

I can understand you feeling at the end of your tether - it`s so frustrating to try all these different drugs and cope with the various nasty side effects. No wonder you liken it to being on a roller-coaster.

I hope someone can help, and I`m sorry I can`t, but I just wanted to say I hope things improve for you very soon,

Love, Kathleen xx

hi Mylo

I am wondering if the dosage is too strong and your immune system is being suppressed too much. We all respond differently, it's a balance of getting the inflammation down without wiping our immune systems completely out. This is something you could discuss with your rheumy.

Best wishes
Rebecca

Hi Lyn and Rebecca

Thanks for your replies.

I attend the Royal at Derby. The rheumatology department there has been very good (and extremely patient!) over the last five years.

If I've understood their intentions correctly, the rheumatologist and haematologist are suggesting that I continue with the Enbrel, but have a GCSF injection whenever the neutrophils drop below 1.5. If that is still the intention, I'd want to have a discussion with my rheumatologist first as my reaction has been pretty awful. It's now about 10 days since the GCSF injection, and my joints are still stiff and achy, but without the swelling. The fatigue is overwhelming. Such a shame, because I felt so well and energetic (almost normal, if my memory serves me right) after the first few Enbrel injections.

I'm sure this comes over, but I feel so much like Eeyore. Life feels so bleak, though that's unfair of me when I read what you and so many others have been through over many more years than I've been suffering.

I hope your appointment goes well on Tuesday, Lyn - look forward to hearing how you get on.

Mylo x

Hi Lyn again!
One of the many things I don't understand about RA and its treatment is how the medics decide which drug to prescribe. My consultant is quite adamant that Enbrel is the one for me. I worry that it's really too strong, and I've been tempted to go back down a level to the DMARDs. He suggested Azathioprine (spelling??) and Hydroxychloroquine if needed - but he really feels that I'd be better off trying Enbrel. But would the neutrophils have behaved better with the Azathioprine?, and is there any way of knowing? Please do let me know if you have any further thoughts about the whole neutrophil issue - I'm very confused.

Hi Paul
Thanks for the comments. I suspect you may be right, and I may have an element of depression. I'm thinking about self-referring for counselling. I try not to moan too much at home, but my husband sees through the act, and then he worries more; we have a teenage daughter, and I try to hide my aches and pains and tiredness from her, as I know she worries, and so we all go round and round. As I mentioned before, the self management programme helped me a lot, but at the moment I seem to have lost the energy and discipline to manage myself!

Mylo x

Hi Mylo

Had my rheumatology appointment yesterday and was able to get replies to some of the questions I posed.

Unfortunately Rheumatoid is a very inexact science and often solutions can be very much trial and error. Answers to problems are regularly patient dependent and what applies to one simply doesn't work for another. I have, over the years, studied medical and life sciences and have been part of a number of drug and health trials along the way. During that time I have reached the conclusion that although we have an umbrella of Rheumatoid Arthritis the causes, symptoms and treatments vary hugely and possibly suggest that RA is actually one name for many diseases. If you take the inflammatory factor alone this can be caused by Interleukin 6, tumour necrosis factor, production error in b-cell lymphocytes etc. Hence the reason some treatments work, some don't!

DMARDs work for many people and often will be sufficient to bring the disease under control. Clearly the way forward, and as per NICE guidelines, is to use the least toxic of these potent drugs. Most DMARDs have been around for quite some time and are well documented and tested. For some though more specific medication is needed which can target particular areas. The biologic drugs are relatively new and their long term efficacy and side effects are less well known. Although the cost is an issue the guidelines do try to ensure that those who need the biologic drugs are offered them appropriately.

As regards the neutrophils this can be quite a concern for anyone with RA and can play a big part in the symptoms of the disease. Neutrophils are the white cells that gobble up the bacteria so a lack of these can lead to serious infection. The normal treatment is to stop the medication that is causing the problem until the neutrophil count increases to a minimum of 2.0. I am advised that, in our area, GCSF injections are used in only rare cases where the neutrophils have been completely wiped out and stopping meds has not improved the count significantly. At 1.3 I do not meet the criteria. One of the concerns for the use of this treatment in RA is that studies have shown results suggesting that G-CSF produced by synovial cells stimulated by inflammatory cytokines might contribute to inflammatory arthritis in RA patients. This would confirm your reaction Mylo to increased RA symptoms following injection. It's possible that Enbrel is not the culprit but the methotrexate may be the drug causing the problem. Both Enbrel and MTX would need to be stopped until the neutrophils increased. MTX is then re-started at a lower level, ie 5mg.

Certainly worth speaking with your rheumatologist as they need to be aware of the problems you have experienced. I have, without exception, always improved after a period off the drugs and been able to restart, albeit after many months on some occasions! .

In my opinion advice from the rheumatologist is needed here Mylo; hope you are able to get an early appointment. Good luck

Lyn x

Perhaps I am stating the obvious but you have the final say what goes into your body so just say NO.