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Pre-diagnosis; advice on questions to ask etc

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leanne28714
leanne28714

Dear all, first of all I'm brand new to this forum and hope I am in the right place (apologies if I'm not). Let me start by saying I'm a 27 yo female based in London. 

I was referred by my GP to a rheumatologist 2 months ago after experiencing an intense 3 day migraine, fatigue, joint pain and inflammation across my fingers, wrists, hip, knees and neck and morning stiffness for nearly 5 hours. I was simulataneously referred to a clinical infection team as I'd recently travelled to Costa Rica but all my tests have come out negative (and they have tested for everything....twice). Currently my GP suspects RA.

On my initial visit to Rheumatology I was told they'd prefer to see the outcome of clinical infection team before conducting more tests, but did inject me with steroids in my lower back which has alleviated the morning stiffness to some extent. I am currently on naproxen and co-codamol by my GP.  

I return to the rheumatologist tomorrow. So far my blood tests have been negative for rheumatoid factor but some markers have shown inflammation (forgive me but I've forgotten which ones). 

I am looking for some general advice in terms of the kind of tests I can expect to have at this stage. My symptoms have generally gotten worse since initial onset of symtoms and today, now I have on/off pins and needles in my feet and hands, more fatigue and general brain fog and my work is suffering when I have been able to go. I've also developed lumpson my elbows and backs of hands but the naproxen is helping the inflammation and the steroids have been helping the morning stiffness somewhat. I have lost full range of motion in my neck and hands and have lost ability to grip some things. My mood has really taken a beating whilst I have gone through this process.

If anyone can also offer any advice when I go to see the rheumatologist in terms of things I should be asking them to look at generally or tests to do, then I'd be very grateful. I've made a list of all the symptoms I've experienced so far and the general time line. I am not trying to steer towards a particular diagnosis (and I appreciate rheumatological illnesses are generally tricky to diagnose as they are many and varied) but I want to make sure I go armed with a bit more knowledge and advice. Apologies if it's a bit wordy and all over the place and thank you in advance. 

0 likes, 24 replies

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  • leanne28714
    leanne28714

    Posted

    Dear all,

    Went to the Rhuem department yesterday and saw Consultant as well as Physicians Assosciate. Had a thorough examination of joints and they witnessed the pain I felt on each and they felt the now quite minor swelling left in my finger/wrist joints (largely kept under control by the naproxen).

    I have been put on a 2 month course of presnidone 20-15-10-5mg and told I should feel a lot better in 24 hours and I have the number of the consultant if I don't. They are suspecting viral althralgia for the moment although where/when they think I had the virus is anyone's guess. Apparently my blood work is only minorly elevated for inflammation (even though I wrote this down to ask I forgot to sad bloody brain fog). I'm due to see them again in 2 months but didn't repeat blood work on the day. 

    So I guess we see how this runs. I did ask them what the next step would be if this doesn't resolve this but the consultant said she's a bit stump as I've literally no blood work to suspect anything else I've been told at any point that I feel worse to call them straight away. Apologies if I'm now in the wrong forum! 

    • linda23834
      linda23834 leanne28714

      Posted

      Leanne, please don't feel you are on the wrong forum. I have serenegative A. That means it doesn't always show in your bloods. I was being treated for an injury to begin with. It took nearly 2 years for my Rheumatologist to diagnosis me. It is difficult as they have to go on what they see a on the day. I always forget to ask a question Id planned to ask as I feel they are to busy to keep asking. At the moment they are treating you with Prednisone and let's hope this works for you. It's is a question of trying different meds, as everyone reacts differently, if you start feeling worse, then ring them back. When you are feeling so wretched with pain, fatigue and brain fog, everything seems a thousand times worse. Trust me, we have all experienced  this at some time.

      Let's hope the diagnosis is correct and the virus will clear. If not they will try other meds. Please don't despair, it is early days. Mine went from injury, to psoriatic Arthritis to inflamed Arthritis to in the end Seranegative Arthritis. It took a long time to get to this. I remember feeling so frustrated, especially when you have been fit before. I hope the meds help, you aren't on the wrong Forum, any time you want to ask a question, please do. There are a lot of great people on here. Good luck. 😊

  • blair97497
    blair97497 leanne28714

    Posted

    Hi Leanne. Thanks for letting us know. Here's hoping it is viral and that the symptoms pass and that's the end of it. If it is, you won't be missing anything! I looked up arthralgia. Joint pain. Not typically with swelling.

    as you've also read I have seen many on these online groups being treated for seronegative RA too.

    re Prednisone: I had a couple of months in tapering courses similar to you prescription. It was a great relief. I would start to suffer while I tried to sleep at night, and be very eager to get up so that I could take it at the right time. However, it was mood-altering. I found it lowered my social inhibitions. I talked rather freely to strangers. I made some inappropriate remarks at work. I got disproportionately upset and rude a couple of times. It was nothing fearfully bad, but I became aware of it and occasionally felt the need to explain it to people. Anyway, I am not wishing to sound dramatic, just letting you know. According to my nurse at the time, it can effect people various ways.

    Blair

    • Gloria814
      Gloria814 blair97497

      Posted

      very good advice about the prednisone.  I imagine some are bothered more than others  But I was talking to 3 people the other day and all 3 had complaints of change in personality/ depression and what you described.  But oft times it is a much needed drug.  As long as people are aware as the doc doesnt always mention it
  • leanne28714
    leanne28714

    Posted

    Dear all,

    Not sure if this is the right way to do things, but I thought I would post an update on here.

    I am about 2/3rds of the way through my course of Prednisdone (now on 10mg after 2 weeks on 20mg and 2 weeks on 15mg) the 20mg helped substantially, with I would say about 90% gone on a day to day basis and generally feeling better. I don't think I've suffered that many side effects so have been happy.

    As soon as I dropped down to 15mg it was a different story and the pain started returning more regularly and with more of a vengeance ever since. I am now getting the return of inflammation in my fingers/wrists/neck/elbows, less range of motion, more constant and persistent pain.

    I called the consultant as soon as things started getting worse on the 15mg. The got back to me 4 days later to ask how I was and I said still the same and they said I needed to remain on my current dose schedule. They also usefully (note the sarcasm) suggested I take paracetamol if I was in pain (I had already said I was taking a low dose of co-codamol to deal with it again)

    I have called and left another message again asking them for a call back today. I am conscious I am due to finish the prescription in 3 weeks and don't have another appointment with my consultant for another 4 weeks. So I guess I am asking 1) whether people have experienced similar things with dropping down a dose, and 2) whether people have experienced this with NHS rheumatology departments in the UK and 3) any advice in what I should do?

    Thanks in advance.

    Leanne

    • blair97497
      blair97497 leanne28714

      Posted

      Hi again Leanne. That does sound like you're still having a hard time. I was hoping you must have just been sorted and back to normal. :-(

      My symptoms also increased during each reduction of prednisone, but perhaps not as markedly as yours seems to be. However I was phasing onto the DMARDs (not sure if you've read up on DMARDs). If they thought you had RA they'd be no doubt getting you onto those. 

      I got really irked when my rheumatology nurse kind of bluntly told me to get used to taking pain relief. That was lesss than a year ago... despite feeling that I'm doing well on what I'm on, I still take paracetamol very regularly, and naproxen quite often too. So maybe the nurse was right, but her manner was hard for me. I took her advice but I felt she could have made more of an effort to understand that I needed more gentle introduction to the realities of my brand new disease, 

      I'm in New Zealand, we have similar to NHS I believe. It's really frustrating having these delays when you are in pain and wondering what you can do. I'm not sure its any help but I have also tried private now and really don't find the availability or response time that much better, and without the benefit of a rheumatology nurse with my private rheumatologist. Public at least made the nurse support available to advise on the phone - or more often, to leave a message. I would be as happily back to public now if not for my work having introduced free health insurance.

      I don't know if that helps 1 and 2. 

      What to do? You have to be your own advocate. You'll have to hassle them if it is bad. Also you could ask about combinations of pain relief. It seems well established that there is a better effect from taking more than one kind. For example I'll still take paracetamol together with the anit-inflammatory. 

      My small-hours thoughts after 3 on a Tuesday morning. A little ankle pain interrupted my sleep. Have to see if I can get a couple more hours rest before another work day. 

      Keep us posted.

  • carol303055
    carol303055 leanne28714

    Posted

    Hi Leanne, you must be so fed up. I ended up on just prednisolone 30mgs having had Methotrexate and my Biologic stopped due to lung fibrosis and an underlying resistant chest infection and so the steroid was all I had to control my symptoms. When I came to restarting my biologic (restarting Methotrexate not an option) it was a case of reducing my steroids. Yes, I could tell the biologic was working but I was missing the methotrexate. I reduced by 5mgs every 3 or 4 weeks till I got to 10mgs and boy I knew it. I could so tell when I then dropped to 7.5mgs. I therefore agreed with my GP and Rheumy Team that I should continue to reduce it as gradually and slowly as possible. My latest drop was to just 7mgs! It was put to me I may not get off them altogether despite the well known side effects. I am taking bone protection. I will continue to reduce them but I am nervous. I'm just trying to say I can't see why you shouldn't be able to reduce them more slowly. Paracetamol just doesn't cut it, though I do use it to supplement. I agree with Blair, hassle if you need to. You only understand this debilitating pain if you've experienced it. I also relate too well with Blair's 3 / 4am posts! Good luck. Let us know how you get on. Carol x 

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