PMR, Seronegative RA, MCTD -What on earth do I have?
Posted , 14 users are following.
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.
0 likes, 29 replies
megan42504 simon51537
Posted
Hey Simon. I’m a 51yr old female and also had struggles with initial diagnosis of PMR. Went to an orthopedic for knee pain, had had two surgery’s. X-ray and MRI showed arthritis, and within a week my shoulders and “glut joints “ had frozen on me. Was sure I was dying. Orthopedic wished me luck....my primary tested me for a ton of tests and found nothing. Three excruciating weeks later my rheumatologist diagnosed me in minutes. I think the age is a big tripping stone. 40 mg to start, and have been cutting back for months with one major setback. My breaking point seems to be under 12 mg.
Have also had bad esophagus issues, maybe because of the steroids? Just had an endoscope, and as the nurse went through my history ( IBS, thyroid probs, psoriasis, Sjogren..) she mentioned it was a lot of autoimmune. Never connected the dots before. Don’t know if this is helpful, however I’ve found comfort trying to understand what PMR is and can be.
Good luck. 👍.
simon51537 megan42504
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Looking back, is there anything you would have approached differently?
megan42504 simon51537
Posted
I wish I’d taken better care of myself. I’m sure that being in better physical health would have helped me. Stay as strong as you can be.
It’s easy to get frustrated and angry: My 84 year old mom in law was diagnosed 6 yrs ago and is now on 5... went thru hell, and is now active and positive! My inspiration.
You’ll do great!
megan42504 simon51537
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Take care
Sladey simon51537
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First of all blood tests aren’t always reliable. 1 in 20 don’t show an elevated ESR - because of this and my age - 57 at diagnosis - it took 2 years and eventual reversion to the private sector - to get diagnosis. 2. Forget the sinful food element. You are fit and healthy and that’s a red herring. 3. Shoulder pain you describe sounds like PMR. Get another referral and if possible, go private. Knowing what’s wrong and dealing with it is so much better than living with the unknown. Best of luck. Chrissy
Michdonn simon51537
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megan42504 simon51537
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New day, new problems?..... so thankful that walking is no longer an issue. I never know what new pain I’m having is PMR. Having crazy foot cramps in the middle of the night. And now my foot/toe joints are painful. PMR? Possibly? Maybe it’ll show up as inflammation in my blood work? Ugh.
EileenH megan42504
Posted
Try a magnesium supplement for the foot cramps - pred makes you lose magnesium and calcium through the kidneys so you get low. That's why we should get calcium/vit D supplements and really they should be accompanied by magnesium. It is also the first thing GPs in mainland Europe suggest when you complain of cramps - if that doesn't work they then look further.
Michdonn megan42504
Posted