Blood tests

[barbieg]

I have RA and my husband has been having blood tests for RA unfortunately. When he saw a consultant at his first appointment it was very visible as his hands were so swollen and painful.. At his second appointment he was told he definitely had a inflammatory arthritis, but they didn't no which one as most of the blood tests were contaminated! He was put on steroids at his first appointment and given a steroid injection at the second appointment and had the repeat blood tests done later that week. Saw the consultant last week only to be told the blood tests were all negative and the hand X-ray showed no inflammation. I'm really confused now and looking at some of his blood tests result ( we were given a copy by our GP) two of them say above range ( Monocytes count 0.9 and Eosinophil count 0.7) does anyone know what they mean. Also, considering he was on steroids and the extra steroid injection, would that mask his blood test results. The swelling went down but he is still in a lot of pain. We are in the process of transferring over to my rheumatologist in a different hospital but that will takes about 12 weeks . Can anyone help please. I was lucky as my blood test showed the rf factor.

[Hidden]

That's terribly unlucky for both of you to have RA/ inflammatory arthritis I must say.

To answer your question - yes steroids would certainly alter the blood test results for inflammation. I had the same problem at the beginning when a steroid injection stayed in my system for over 6 weeks and delayed my diagnosis of sero negative RA by four months. I did have a low positive rheumatoid factor of 26 and a high ESR and CRP so the rheumy knew something was up at least. The thing is to be on a good rheumatologist's list so your husband is lucky to have yours as a known quantity.

There are sero negative types of inflammatory arthritis such as psoriatic arthritis (PsA) and Ankylosing Spondylitis (AS) which are closely related to RA but often harder to diagnose because they may not show up in the blood at all. I don't know exactly Eosiniohils are but my GP did once take these when I had hives so I am guessing this might be a sign of inflammation in the skin?

Does you husband have psoriasis at all or suffer from back pain? It is possible to have PsA without the psoriasis. I would advise your husband to stay off steroids and NSAIDs in the run up to his next appointment and take photos of any swellings in joints too.

Best of luck to you both.

Twitchy

[barbieg in reply to Hidden]

Yes, my hubby had Psoriasis diagnosed about 30yrs ago, but it only lasted for a week and disappeared completely. I asked the consultant about this and mentioned seronegative arthritis, and got no answer at all. He was just told to stop taking the steroids and see what happens. It's a good job I am a bit savvy having RA for 10 yrs otherwise hubby would have stopped taking them, not realising you have to come off them slowly.

[Hidden in reply to barbieg]

Hmmmm sounds like he needs a better consultant!

Even one short lived episode of psoriasis could be a clue to what type of arthritis your husband is suffering from now I believe. Of course I'm only speaking as someone who has done a lot of research for myself - not medically trained. But some doctors become complacent/ arrogant and forget how to communicate and how to listen and ask us the right questions. These types probably still take a lot in and may be turn out to be right on many levels. But it is easy for us patients to get the wrong messages if they won't share anything or explain basic stuff such how to come off steroids safely.

If you have a good GP then the best thing to do would be to get a copy of this rheumy's letter off them and talk things through with them.

[Hidden]

Many peoples bloods may not show RA so under that premise it may be decided to take scans of affected joints.

If you have a good RA Specialist stick to it as we all need to be comfortable with them

BOB

[Livingston]

Elevated monocyte level can be caused by inflammatory disease/chronic inflammation. Depressed level by steroids.

Elevated eosinophils also caused by inflammation.

[Hidden]

I know we're meant to have treatment free at the point of delivery and all that, so I hesitate to recommend a private consultation for the second time in 2 days as we shouldn't really need to go down that route. However, when there's all this waiting involved a private consultation can help with the sanity! As well as hopefully shedding light on the condition and potential treatment plans.

I paid £150 for an excellent private rheumy's opinion 3 years ago. And at the time money was very tight but I clawed the fee back quite easily within a few months seeing as I was too ill to go out and spend on more enjoyable things.

[barbieg]

Yes, we are thinking about a private appointment as that is what I had to do when I was diagnosed. My Dr. kept telling me all my pain was my fibro (30yrs down the line) and I kept saying this was different. Found a private consultant , at a cost of £80 then, and was diagnosed , bloods tested and on treatment within a week. He then saw me on the NHS until he retired from NHS and only does private work. The only problem I think about going private is the steroids he was given that will be in his system for a good few weeks I think? They worked as far as the swelling, but that's all it did. I had very little swelling ,so really nothing to see, where as my hubby's hands were so swollen it was obvious he had inflammation. Life has been fun these last few months as I always relied on him to open things for me, now he can't help which is really upsetting him. I so want to help him, but also worried about the medication he might be put on as he also has COPD, eye problems (macular degeneration, wet in one eye and dry in the other) and a hernia! No fun getting old is it? Mind you , there's always people worse off too.

[Hidden in reply to barbieg]

I suppose one of the nice things about going private is that you can usually communicate a bit beforehand. So you could inquire about the fee etc. and also about whether it would be worth going given that your husband is still benefitting from the steroid injection. Even the fact that the injection has tackled swelling might be relevant in terms of a diagnosis.

[barbieg]

That's interesting that you were told to stop the steroids. I wish I had thought to take photos when hubby's hands were so swollen, as his hands look normal now, in fact the swelling started to go within a few hours of taking the first pill. We are quite prepared to go private but I am hesitant as there is nothing to see at the moment. Pain is invisible unfortunately. The other problem about going private is the wheels have already been set in motion to transfer to my consultant, and she doesn't do private work. Does anybody know the best way to stop the steroids? He was told as far as I can remember when I asked the consultant to take 2 and 1 alternate days , but not sure how long to do this and then what should he take. It was 2 x5mg a day.

[Hidden]

This (getting off steroids) is something he really should get help from his GP with. Once he comes off you could be poised with a camera. I wouldn't worry too much about going for a private appointment if he is already on your own rheumy's NHS list. But if you decide to go ahead with a private appointment then I have found that I flared up again quite soon after stopping them - same goes for NSAIDs depending how long I have taken them for. It really shouldn't be this hard of course but for many of us it is. Best of luck. Tx

[Hidden]

Yes - it makes me feel lucky to have a diagnosis of RA for now - even if I'm very unsure it's the one that actually fits.