Latest appointment

Saw my rheumatologist yesterday and came away feeling as though I was being a bit of a nuisance and perhaps making a fuss, as she had more deserving people to see. My husband didn't think that was what she was getting at, but it was the way I was made to feel. She is irritated that I have not got my pred down as low as she wanted (I'm down to 17.5 having started on 60 in September, and was down to 30 when I saw her in December). I mentioned that I hadn't dropped as fast as I started getting head pain again, and she suggested I take paracetamol. Any other symptoms she put down to the pred. Doesn't now want to see me for 9 month now, as my blood results are OK, and wants me virtually off the pred by then, and will discharge me to GP care. I am seeing ophthalmology in a couple of weeks which is reassuring! My cardiology appointment was postponed from last week to 1st May, so I guess my echocardiogram was ok after my SVT attck. I've decided that as nobody is worried about me I'll take my lead from them!

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  • It seems to be a trait in rheumatologists - I had two like that and one was a close colleague of my husband so heaven knows how she treated Joe Public.

    I don't know where you live - but I would seriously consider a change of doc if you need to see one again. That is an amazingly fast reduction rate she is suggesting for GCA - be different if it were PMR. I know GCA patients who took way over 6 months to get to 20mg. Recent research suggests there are still inflammatory signs after 6 months on above 20mg even though the blood markers are normal. Wait and see - and I hope your GP is more caring.

  • This rheumy is the "expert" apparently! At least as she doesn't want to see me for 9 months I can do what I want!

  • Where are you based? Not details, just area will do. I've heard a few bad stories about one "expert" who shall remain nameless but they seem to be stuck in a time warp. As it is - the rheumy I saw here was far more interested in practising his English - so I just work with my lovely caring and rheumatology-experienced GP who is the one who tells ME to go slowly! I already use the "Dead slow and nearly stop" technique. Any slower and I will be on the current dose for the next 10 years!

  • RJW, I too started Pred in September. 40mg, along with 5 methylpred infusions. Gradually dropped down to 10mg, but last time I saw her (9th Feb) she had hoped to reduce it to 7.5 she decided to keep me on 10mg for another 3 months. Also on MTX and Leflunomide with amended doses. MTX raised from 20ml to 25ml, Leflunomide lowered from 20mg to 10mg. Don't see her until May, when presumably she will lower Pred to 7.5. She claims I have Rheumatoid Vasculitis, but I'm not sure she's completely right as some of my symptoms - which she doesn't seem to know are caused by, are very similar to PMRGCA!!

  • I've come across this once before and I'm intrigued - what ARE your symptoms? Have you had RA for a long time?

  • PMRpro,

    I was diagnosed with seronegative erosive nodulizing RA in 1987. Various treatments over the years, eventually put on MTX tablets at first, then injections 25 mls. Leflunomide 10mg added in. Took these successfully for several years, then in 2012 I was diagnosed with breast cancer. Needed chemotherapy so had to stop MTX but carried on with Leflunomide. Chemo started Feb 5th 2013 and ended May 23 2013. RA was stable so I wasn't put back on MTX.

    In June 2013 I began to itch. Was referred to Dermatologist to be told I had Nodular Prurigo, but he wouldn't put me on a systemic treatment because of the cancer. By now, my joints were playing up again. I had appointment with my rheumy and told her about the NP, showing her my legs where the rash was at that time. Now it's everywhere. The outcome was, that I had become seropositive and rheumy said I had Rheumatoid Vasculitis. Started me on Pred, and back on MTX. It has helped with Vasculitis rash which was redness around my calves with the itching coming from deep inside my legs. NP is still active, with massive nodules which hurt as well as itch.

    Symptoms she is ignoring and says she doesn't know what is causing them, are sinusitis with head pains, no infection. Pain in lower back across both sides, sometimes affects hip joints. Pain across both shoulders, and up into my neck. Sometimes my spine is painful too. My lower back, buttocks and upper legs feel very heavy and sometimes feel as though I'm about to fall. Numbness and throbbing in my toes, which I now get in my fingers.

    Sorry for the full works, but I just don't know what symptoms RV causes, and if the rest isn't PMRGCA, then I don't know what they are!!

  • Have you ever posted on the vasculitis forum on here and asked if anyone there recognises anything? It sounds as if it could be some other form of vasculitis and it just so happens some of the symptoms look like Rh vasculitis. I imagine that like any other autoimmune disorder there can be overlaps.

    If it were me I would want to be referred to a real vasculitis specialist to discuss the bits she admits to not knowing about - you can't just ignore them. Did she use pred other than the injections? Did the injections help the ?PMR symptoms? Even if they didn't help for long, they should have helped for a short time if it is PMR. Does she not use pred for the RhV - since I understand it is one of the approaches to therapy - or have I misunderstood and you are on pred just maybe not enough?

    The shoulders and hips/legs problems could also fit with myofascial pain syndrome - I have both that and PMR and those bits overlap. When the MPO is eradicated the PMR is happy on a very much lower dose of pred. I've had cortisone injections into my back muscles (it's a long story and I don't live in the UK so treatment options here are a bit better) but I've also had manual mobilisation of the trigger points by a physio and in the UK I used Bowen therapy very successfully as have others with similar problems - you would know fairly quickly with Bowen, if it doesn't have an effect in 3 sessions it probably won't. It may recur - it is probably not helped by posture/other physical problems so you can sort it out fairly well and then keep it under control.

    You have my sympathy - it sounds horribly uncomfortable to put it mildly.

  • I am a member of Vasculitis UK, and have asked John Mills questions. He also suggested asking my rheumy if she has discussed my case with a vasculitis specialist who is on the same team as she is at my local hospital. She said there was no need as she was a vasculitis expert herself, all rheumatologists are, and she wasn't very happy that I was questioning her diagnosis. She more or less said that Vasculitis is Vasculitis and that's that! I was also told that although Vasculitis is rare in the general population, among those of us with RA it is quite common.

    She did immediately start me on 40mg Pred tablets for 28 days, followed by 3 Methylpred infusions of 1,000 mg each. I haven't had any injections in this instance. The dose of the tablets was reduced to 30mg , then down to 20mg for two weeks, during which time I had 2 more infusions. Then it was reduced to 10mg. She did want to reduce it to 7.5 at my last appointment on 9th February, but decided to keep it at 10mg until I see her in May. She has increased my MTX from 20ml to 25ml and reduced my Leflunomide from 20mg to 10mg.

    Thank you for your suggestions, I'll just have to see how things go between now and May. I am having monthly blood tests for the MTX and I take Adcal + D3 for my bones.

  • How arrogant - and I suspect real vasculitis experts might disagree! If you have rheumatoid vasculitis alone yes, it is relatively common in RA patients, but if you have another as well it isn't. The figures quoted in the literature suggest 1% of RA patients develop RhV - and Johns Hopkins call it an "unusual complication" - is that common? If all rheumatologists were vasculitis experts one would have thought there wouldn't be as many people trailing around for years looking for a diagnosis.

    You are in a difficult position but I think I would consider asking my GP to contact one of the specialist vasculitis units such as the one at Addenbrookes. John will tell you where the best are, there's a very good one in London I think too. Your GP could ask for advice - you are entitled to ask for a second opinion and I would be suspicious of a doctor who was so arrogant as to object.

    You haven't said - during that period when you were on that high dose of pred were your "?PMR" symptoms better? I would think most of it would be better at 30 and 40mg - but PMR should respond to any dose over about 12mg. Some of those pains could be due to the somewhat precipitate reduction of the dose from 20 to 10 if that is what she did. If so, they should improve with time.

  • Thank you for your advice, my back pain etc was just as bad while on higher doses of Pred, but usually only get it when standing or walking. So maybe not related to PMRGC.

  • All that you have said makes it sound more and more like myofascial pain syndrome rather than PMR pain which would improve a lot at higher pred doses whereas the effect on MPS isn't as obvious. I couldn't stand for more than a few minutes without having to move and walking was excruciating after about half an hour at most - far less later when it got worse.

  • Gca September started on 40mg this month going down to 20mg as PMR pro has said inflammation can still be there going from 25to22-5mg was hell thank the Lord my GP practice is a teaching one so very well equipped I have become very good friends with ECG machine . The guy who did my biopsy is county GCA expert and he recommended stick with GP. With mine we have agread reduction plan she has a copy every month with amount of tablets on bottom I do all the working out 3days later collect prescription . Following the 10% a month reduction I will be on these things a long time as GP said to ophthalmic department on phone in front of me "her eyes are more important they any thing else "when they said 4 weeks for appointment took 3 days sometimes the humble GP is best so good luck

  • As my husband said about the chemo that made him deaf - better deaf than dead. In GCA being extra cuddly is a decided improvement on being blind. It doesn't bear contemplation does it?

  • To people with GCA (PMR as well). These sites carry the current British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of GCA (and PMR).

    Download and read.

    BSR

    pmr-gca-northeast.org.uk

    NHS

    Knowledge is power.

    Your sight is very important and you need to learn fast.

    RJW - change your consultant.

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