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simon51537 simon51537

PMR, Seronegative RA, MCTD -What on earth do I have?

Hi all, first time poster in some desperation! Thank you in advance for reading and especially for any replies.

A bit of context. I'm a 51 year old male on the UK who until recently was very active - gym everyday, cycling up mountains but I never really took care of my health - eating rubbish, too much of the party lifestyle, too much stress, but I looked and felt well. 

Anyway, and please bear with me, last year was a year of illness. First I detached a bicep muscle in the gym doing far too heavy weights, then I had a large lipoma removed (my leg is still numb from the op after 9 months) and in about November I tore a meniscus at the gym and had surgery to correct a bucket handle tear in January.

At the same time I had pain in both shoulders and after blood tests (after surgery) indicating high ESR, CRP and RDW it was suggested I might have Polymyalgia Rheumatica and I was referred to a rheumatologist. He took more blood test and no RA factor was found and anti CCP was negative. He suggested seronegative RA and put me on a course of Prednisolone 40 mg originally and I am down to 10 mg now. The pain did get better but it's not great as I write. In addition one blood test came back indicating MCTD and another was negative. Aside from pain in my shoulders and severe pain in my knee - I have no fatigue, or other symptoms associated with autoimmune. I believe I had IBS for years and now I have cut wheat from my diet and am doing all I can for my gut health. So that is the background. 

Unfortunately I have the following concerns/ symptoms and I would be grateful for any insight:

1) What do I have? My symptoms don't seem to fit any autoimmune disease precisely?

2) The surgeon is suggesting another knee op. On the original operation he found no evidence of arthritis but I worried about what an operation would, or might trigger. 

3) My shoulder and knee pain is very up and down but my knee seems to react negatively to overuse (like walking or cycling form an hour plus. It's also a little swollen.

Thank you in advance, this is getting me down.

29 Replies

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  • EileenH EileenH simon51537

    " My symptoms don't seem to fit any autoimmune disease precisely"

    They rarely do - and I believe that autoimmune disease is like an old-fashioned shop with all the symptoms on shelves behind the counter. You stand in the queue and the assistant hands you a selection from the shelves -the disease you end up being labelled with depends on what the set of symptoms you were handed looks like. Some are present, some are not but on the whole it look like a duck although you can't tell which specific breed it is. Yet. Often it changes over time. 

    All the RDW suggests is that you are anaemic - and anaemia is very common in many autoimmune disorders. Why did the rheumy ignore PMR - rheumatoid factor and anti-CCP aren't usually a factor in PMR. Did he perhaps feel it was below his grade to be bothered with? It is a diagnosis made on the history, symptoms and backed by raised inflammatory markers in 80% of patients. There isn't any specific test for it - just history plus response to pred. 

    40mg is a very high dose for PMR - the recommendations are for starting with the lowest effective dose in the range 12.5 - 25mg. Going above that if you don't suspect the presence of GCA muddies the water - PMR typically responds to a moderate dose of pred. other things will respond to such high doses. It is also not a one-off course you take. You don't say how long you have been on pred nor how you have reduced. PMR has a median duration of 5.9 years - although most men do better and often are off pred with in 2 or 3 years. You start with a dose that is likely to be enough to clear up the inflammation that is present and then reduce slowly to find the lowest dose that manages the symptoms as well as the starting dose did. If you go below that the symptoms will return - until the underlying autoimmune disorder causing the problem decides it will burn out and go into remission which it does within 4-6 years for 75% of patients - for about 20% it may do so in 2 years or so.

    So what do you have? Difficult to say. What test suggested MCTD? And what didn't? As I say - why the rejection of PMR? Have you had imaging of any sort done? Are you sure you have no signs of a/i disease? Sweats for example. 

    I understand it is not so much the surgery as the injury which predisposes injured joints to OA and surgery may be protective in preventing uneven wear on a joint. It is a long term problem which I imagine is exacerbated by unresolved injury. I made a mess of my right knee skiing 26 years ago which was repaired very well - only very recently have I had any pain that could possibly be the first signs I have had of OA developing. No idea if it is, I'm having it x-rayed on Friday. But I'm now mid-60s, I would probably be starting to think about OA anyway.

    I assume you are in the UK since you say prednisolone - have you ONLY seen a surgeon for your knee? They are likely to support surgery rather than conservative measures - though I'm only familiar with conservative measures for torn ligaments (which work well, I can say from personal experience), don't really know much about meniscus. However, this may help you sort your thoughts out:

    https://wa.kaiserpermanente.org/kbase/topic.jhtml?docId=te7366

    and a second opinion might be useful. I know it isn't always easy in the NHS though. But obviously your knee isn't fully recovered as a result of the surgery - as the link I've quoted does mention isn't uncommon. I think you may need to go back to basics for a while: RICE! Rest, Ice, Compression and Elevation after your walking/cycling excesses. That may be a good start at least while you sort out what to do.

    • simon51537 simon51537 EileenH

      Thank you very much EileenH. Your explanation and reply makes the most sense out of anything so far. Much appreciated. To clarify a couple of your points:

      The anaemia is very interesting and something which I will certainly check out.

      I don't know why the Rheumatologist wasn't interested in PMR, he just dismissed it very readily.

      Originally I was on 30mg pred but getting severe early morning shoulder pain and so he suggested 30mg morning, 10mg early afternoon which helped. This was only since about January so very quick in the scheme of things. Down to 30 and 20 was OK but at 10mg I seem to be having pain again. But it's different to the original pain. Less severe and more "sharp" rather than dull.

      The MCTD bllod test that indicated positive was an RNP antibody test. But as I said, another test was negative. ENA screen was also positive. 

      You're right about a second opinion. In fact however I'm going private and my GP says PMR and rheumatologist seronegative RA. The 3rd opinion is from the surgeon who encourages Pred use as he believes it protects joints long term.

      I was be having a 4th opinion however as I've also been referred by the optician to a specialist due to a disturbance in the photoreceptor in one eye.

      Happy days!

       

    • EileenH EileenH simon51537

      There are far fewer men who develop PMR and you are at the young end of the spectrum. "Over 50" is in the guideline literature and it doesn't mean it doesn't happen in under 50s - but many doctors, rheumies included, think you have to be 70 or so. The AVERAGE age at diagnosis is 73, but there are many of us not diagnosed or told it is fibromyalgia, depression "our age" (for women) or a range of other things because they think we are too young. No-one told PMR it isn't allowed to turn up early!

      Your reduction scheme is strange - normal for a lot of other things, including an RA flare, but not one that would work in PMR for the vast majority of patients. It is far too big steps. That alone can cause problems.

      "The 3rd opinion is from the surgeon who encourages Pred use as he believes it protects joints long term" - that is interesting. Has he said more than that? Most doctors tell you that pred will damage joints...

      Be careful with your private opinion - just because you are paying doesn't make a dodgy NHS doctor any better! There are brilliant NHS people - lots of them don't do private work though. Where are you?

    • EileenH EileenH simon51537

      Look up Dr Rod Hughes rheumatologist in Chertsey. He is a respected PMR "manager" but thinks laterally - which may be what you need. Does private but will usually add you to his NHS list if appropriate.

  • Bethune Bethune simon51537

    I believe sero-negative PMR is possible as my labs are usually negative, but very specific PMR symptoms return when I go off prednisone.  

    Can’t comment on your other issues, but Id try extensive PT  with  follow-up home exercises done religiously before another knee surgery.  I’ve had total ACL Reconstruction and meniscus repair in both knees, but remain very active wearing ACE  Velcro soft knee  braces. The exercises strengthening all the muscles around my knee help.

    Also before surgery check out acupuncture.

    Good luck!

  • Michdonn Michdonn simon51537

    Simon, I am male 80 came down with PMR when 78. Very active cycling, skiing and gym. PMR stopped me dead twice, first when first diagnosed. 20 mg got me back on my feet and and moving with in a month. Second when I had bad flare, need 30 mg for about 6 weeks to get PMR pain free. Been PMR pain free for almost a year doing a slow DSNS taper and eating an anti-inflammatory diet. Hope you figure out your problem, if PMR it can be controlled. Think positive young man, try to smile. I believe it helps! ☺️

  • shawn99 shawn99 simon51537

    Hi Simon,

    Welcome to my world as I have gone through similar circumstances.

    I came down with PMR 6 years ago, despite eating healthy and being very fit.

    I was a nationally competitive athlete with a 98% percentile rating.

    I woke up one morning unable to move without experiencing severe pain.

    I suffered for 4 months thinking I had torn my hip flexors and finally broke down to see my doctor. After seeing a few specialist it was determined that I likely had PMR and anemia.

    They put me on 20mg of prednisone and high doses of iron supplements. I immediately felt better, although my athletic activities became very restricted.

    I went on the dead slow method of reducing the prednisone and after 5 1/2 years, with the occasional flare up I managed to be off the prednisone with no ill PMR effects.

    The last month of being on prednisone I started to get soreness in the balls of my feet and some swelling . A few weeks later I saw my doctor(GP) who suggested that I might now have seronegative RA .....oh no! I was sent to a rheumatologist and went through comprehensive blood tests and it confirmed my seronegative RA . My rheumatologist thinks that the PMR morphed into seronegative RA. She wasn't 100% sure of that as not much s known about either illness.

    My seronegative RA flared up and expanded into my whole foot, knees, hands and feet. I became very depressed and wondered what I did to deserve all this!

    I am now taking Methotrexate, Sulfasalazine, Hydroxychloroquine and back on Prednisone. The Prednisone is a temporary fix until the Sulfasalzine takes effect.

    Taking all these drugs has worked and I am almost symptom free now.

    Taking all these drugs does not sit well with me and I have decided to try a "new to me" diet that seems to have worked for many people. It is called the Paddison diet and I have just started it. I'll keep my fingers crossed and hope it works.

    During this 6 year period I also had two knee surgeries for meniscus tears (one after the other), carpal tunnel surgery for both hands (one after the other), and stem cell therapy for my right shoulder. My shoulder was supposed to be replaced as it was bone on bone. I decided to have the stem cell therapy to avoid the surgery and it has worked out beautifully. I also had stem cell injections for both my knees and hips for preventative measures.That of course is topic for another forum. It has been an epic struggle, with many bouts of anxiety, highs and depression. 

    Good luck in your struggle and I hope you don't let this disease, what ever it turns out to be, gets you too depressed.

    Shawn

    • simon51537 simon51537 shawn99

      Shawn, 

      Thank you so much for telling your story which, I guess, is akin to mine. Oh dear. Good luck getting through your troubles. 

      I'm very confused about whether to have, a second, knee surgery. My knee is definitely not right and the initial arthroscopy showed no sign of Osteoarthritis but the repair seemed to have been completed well. So, I'm thinking, what's the point of another operation? Might my knee be more RA, PMR, Seronegative RA, or goodness knows what, and was just triggered by the tear? 

      What a pickle. I might get my heads or tails coin out.....

    • shawn99 shawn99 simon51537

      Hi again,

      PMR pain is much different than arthritic pain, but both are very painful.

      PMR is more muscular pain, while RA is joint pain. I had no swelling of my joints with PMR, but RA gave me significant swelling of my whole foot, knees, hands and elbows. My feet were so bad I could not wear my shoes and reverted to sandals and flip flops. No swelling whatsoever with PMR in my case. The only swelling while with PMR came as a result of taking Prednisone. I got a lovely round face and initially gained 5 Ibs. I went a diet of lower carbohydrates and exercised at much as my body would allow and lost the unwanted weight.

      Personally speaking, PMR kept me from getting out of bed without experiencing extreme pain. RA pain did not keep from getting out of bed, only walking (extreme foot pain) and using my hands (painful too). My knees, although swollen, didn't bother me too much when walking. Stairs were a problem, especially going down them.

      Your knee might be affected by RA and until you are PMR symptom free (if that is what you have) it will be hard to know.

      As this is a PMR website I can't go into other illnesses in detail. I would have a good look at stem cell therapy for your knee after having a CT scan or an MRI of the knee. Your doctor might disagree with that, mine did initially. Find a reputable clinic, it is worth a try!

      All the best,

      Shawn

    • Bethune Bethune simon51537

      Hi Simon,  I found the prednisone to treat PMR helped my knee pain for quite a while.  My knees are not particularmy  swollen but basically have no healthy tissue to work with.  I play sports but with braced and taped knees.  I can kick and run.  Next stop knee replacement.  This bad condition and pain and slight instability in knees  is due to over use and sports injuries.

      1. It’s possible you are bone on bone having used up most of your cartilage... common in 50 + athletes

      2. Possible you have a new meniscus tear.... swelling and acute pain

      3. Anything else... 

      There are lots of things to consider before knee surgery again.  I’d Check with some NON-surgeons and see what they mention.  Also you might mention the above ideas and see what they say. 

      Platelet and plasma injections

      Synovial fluid injections

      PT 

      Knee braces 

      Acupuncture

      Voltearen pills and gel. ( the gel was magically for me for a year or so)

    • shawn99 shawn99 EileenH

      Hi there,

      Stem cell therapy is not widely accepted yet and there are many clinical studies going on around the world.

      I can speak for myself and about 2 dozen other friends that have had it done successfully. Two of them ex NFL football players, who after 8 years from receiving therapy, are still experiencing joint free pain.

      Many other friends, mostly hockey players (I live in Canada) have had stem cell therapy for their knees and very successfully I might add. You really need to find a reputable clinic along with testimonials before jumping in.

      The clinic I went to is in Alberta, Canada and the total outlay was $2500.00 for 6 injections. There are many clinics charging much more, which is very unfortunate. There are also clinics that are using improper methods. 

      Unfortunately the entire medical profession has good and not so good people and it is extremely important for patient to check them out. Stem cell therapy is no different.

      I would hate for the general public to think that stem cell therapy is bad or doesn't work as I am an example of how good it can be.

      Cheers,

      Shawn

    • Bethune Bethune shawn99

      Thank-you Shawn, yours is closer to my experience I’ve heard from others as well.  Of course careful research on the track record and quality of the doc or clinic providing  the treatment is always a must!

    • Anhaga Anhaga shawn99

      A followup to the reply I made a few days ago re warning about stem cell therapy.  The person involved has has seen a new doctor who found an infection and she is now on antibiotics.  Was told that the condition for which she received stem cell treatment could almost certainly have been dealt with less invasively and she is cross with herself for having the stem cell treatment without further investigation.

       

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