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

" 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.

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!

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! ☺️

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