The Drama Queen is back!

[Gaijin]

I wish I could honestly claim to be a new member of "Club Zero" but it would be false news because even though I no longer take my favorite drug, prednisone, as the dose that I was dxed to stay on(2.5mgs)for a month before was not controlling any of my symptoms. I am much worse than I've ever been, so I went up to 15mgs for a week but noticed no improvement.

I have migratory joint pain, wake up as if coming out of a coma after being run over, big time ADD, but worst of all, muscle fatigability that makes it very scary to walk as my knees start buckling and my dexa scan says I have a high risk breaking my hip.

Desperation has forced me to break a promise I made to myself to never ask my OH to get me in to see a colleague at the hospital where he worked. I remembered he had a fellow Neurologist who specialized in neuro muscular disorders and was known to be a kind of Dr. House. This doctor really listened to me, made me walk, do a squat, get up from a chair and sit up from a lying position, etc... He did the whole complete neurological thing they do.. He then ordered blood test and a muscle biopsy (maybe, pending on the test results)

I'm not sure if I ever had PMR, my OH and the rheumi, whom I had never seen before, diagnosed me with PMR in the waiting area.. He said I was too young (65) to have PMR (haha) and wrote "probable PMR". From then, I decided to go the regular public health route, saw a GP for the first time in my life and got prescription for prednisone automated and was basically alone with my PMR as I awaited my first official appointment with the Rheumatologist that took 4 months. Thanks to PMRpro (Eileen, back then) and all the aunties and uncles, I was able to understand the basics - diet, supplements, exercise, traveling, etc. When I finally saw the new Rheumi, I probably knew more about PMR than he did! 😕😬

Maybe I did have PMR and it has gone into remission thanks to Actemra which really did cure all my symptoms for a while and brought my CRP down to normal for the first time in years. I am still on Actemra as Dr. House told me to stay on it till we know for sure. The muscle biopsy is to rule out something quite scary called Inclusion Body Myositis. I think my dentist was right when he said he thought I had Sjögren’s, I will soon find out.

I have been freaking out lately, visiting all sorts of groups on Facebook.. Sling the Mesh, Sjogrens, IBM,..

None of them compare to this group.. It's like comparing a 5 star hotel to a motel.. There is no other community like this one, so warm, intimate and informative. So many beautiful, clever writers, too.

I hope I am still eligible to be a part of this community that has taught me so much (even English) at least until I find out for sure if I had PMR.. I may never know!

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry to hear about your continuing problems.

Even if you never had PMR (although maybe you did) you’re still welcome and I sure others will agree you can be an honorary member. 😇

[Gaijin in reply to DorsetLady]

Thank you so much. 🤗

[Constance13 in reply to Gaijin]

No need to leave. All, or most, of those who suffer pain will find like spirits/sufferers who will talk you through rough periods.

[yogabonnie]

I am so sorry all this is happening...but glad they are going to get to the bottom of it. What was your dexa score? It sounds like you had PMR and it's flared back.? perhaps? but then if the prednisone doesn't help... oh.... I know nothing!!! just babbling. But always like your posts and replies so stay with us! AND keep us posted on these results. Glad you found someone good! Also HARD as it is... get off the internet and don't read about all the things you might have. YOU might not. and the stress is BAD! (go get my RELAXATION tracks under subject Relaxation on this site!)

[Gaijin in reply to yogabonnie]

Thank you, Iove your relaxation tracks!

You are 100% right. I usually wouldn't be surfing random diseases but the last two doctors visits were so incredibly disappointing that I had to find out a solution. My last, long awaited rheumi appointment was with a locum, it was useless. The endo appointment was also frustrating as I was hoping he would say I had primary hyperparathyroidism and refer me to a surgeon and all would be great, but all he said was "let's repeat the 24 hour urine test to see if you still have hypercalciuria", I got an appointment for June.

The new Neuro did say at the beginning of our conversation, not to "interpret".. Hahaha

[PMRpro Ambassador]

Hmm - polymyositis (of all sorts) is supposed to be a rule out in PMR investigation.

Keep us informed... xxx

[Gaijin in reply to PMRpro]

He thinks it's not polymyositis but rather Inclusion Body Myositis. I believe it's the autoimmune kind of myositis. .or maybe they are all autoimmune?

I had two EMGs before the PMR dx, both were negative except for sever carpal tunnel. But you gotta remember, my PMR diagnosis was made in a hallway, lead by you- know-who. He probably chose PMR because it required the least amount of Prednisone compared to the other possibilities.. Hahaha...

But seriously, the pain I have now is not bilateral and it was before the dx, although my main complaint has always been the bucking knees when I walk, and I was responsive to the prednisone all that time. Couldn't it be that the Actemra put me in remission of PMR and what I'm feeling now is something new? Sjogrens or IBM(G. F.)?

[PMRpro Ambassador in reply to Gaijin]

Who knows. Time may tell.

[SheffieldJane]

Thank you for what counts as a proper letter. Your news is startling to say the least. Actemra is such an unknown quantity, it makes symptoms hard to read. I wonder about Sjögren’s syndrome too, there are lots of parallels with PMR and I have got the awful dry mouth thing. I hope your tests do not show up anything worrying. I would be very interested to carry on getting your updates. You have been missed and fit right in to this special forum. Your analogy is perfect! Take care old friend!

[Gaijin in reply to SheffieldJane]

Thank you, Jane. I'm convinced I have sjogrens, as the symptoms (dry mouth, eyes,) have increased, besides the pain and fatigue and worst of all gait problems. My dentist suggested it months ago but no one paid any attention to me. However, I think I will be able to give a good update, this new Neurologist even asked me about my family history and I think he must have ordered every blood test under the sun! Maybe he will even be able to tell me whether I ever had PMR.

Thank you for all your comforting responses. I will surely be back on here... with my luck lately, I'll probably get a PMR flare and have to start at my original dose of pred-20mgs..

[PMR2011]

Hi Gaijin, sorry hear of your troubles. Might be worth investigating your symptoms as a potential side effect of Actemra. I did hear of one other person with similar symptoms who felt it was that. Hope you find the support to figure it out.

[Gaijin in reply to PMR2011]

Wow, PMR 2011. I had never thought of that.. I was about to go off the Actemra but my rheumi is totally inaccessible and my new neurologist probably didn't dare tale me off of something he didn't prescribe, although he was very surprised to find that the only thing written about my diagnosis was that I had "torpid" PMR. He thought it didn't correspond to a dx of Actemra. He told me to stay on it till "we know more". But you ha e got me thinking, I'm going to go off of it, I can always go back on if needed, which I doubt because it isn't doing anything for the symptoms.

Thank you for enlightening me.

[Suffererc]

What is Shogrens please

[Gaijin in reply to Suffererc]

Sjogrens is another autoimmune disease that causes dry eyes, mouth,, throat, it attacks the salivary glands but can also be extra glandular, attacking kidneys and other vital organs.

[Singr]

Soooo interested in this. I was trying to explain to ...whoever was assessing me at the time and its like a who's who of who wants to move on from Rheumatology. I said it's like my knees are not safe in their joints and sockets. I randomly fell once and I think that was that my knees are not totally together, they are shoogling all around (good Scottish Word). All I get is blank looks and no one takes note. I'm so sorry you are experiencing this but so glad it resonates with what I am trying to describe. Perhaps I should have an appointment with a Neuro thingumyboby. How did you manage to swing that one? Hope you find your "grail" as they say in Spamalot.

[Gaijin in reply to Singr]

That's exactly it! Shoogling.. haha.. This was my main complaint when I was first diagnosed with PMR and I did see a couple of posts from people with PMR as having "wobbly" legs. Mine don't shoogle right away, I have to walk a ways, not always the same distance, before it starts.

I'm embarrassed to say that I got in to see a neurologist because my husband is a retired neurologist from the same hospital, where he worked for 45 years. When he retired, I had to find a GP in my area of domicile, since I already had a diagnosis of PMR and all my records were from the other hospital, I wasnt getting anywhere, so I got an appointment with this particular neurologist through my husband.

If the shoogling gets any worse, maybe your GP can refer you to a Neurologist?

[Telian]

I don't do other forums even though I qualify, but pleased to hear the comparisons and would add 'genuine' to your list of tributes. Love the analogy '5* hotel to a motel*', it's what I always thought but had nothing to compare it with.

Best wishes.

[Gaijin in reply to Telian]

Thank you, Telian, You've just given me an opportunity to explain myself. The fb group on mesh implants, "Sling the Mesh" is an amazing web page that has helped hundreds of people realize and take action regarding their implants. So in that sense, I take it back about them. But you still have to weed through lots of unintelligible comments in order to get some useful info. This community has sure spoiled me, almost every post is worth reading. At first I was embarrassed to post as all the writing was so good.. the motels are just the opposite, I'm afraid, hahaha..

[Daisychain12 in reply to Telian]

I love to read your posts Telian. Xxxx

[Daisychain12]

Darling this is really distressing for you. Please please keep us up to date with developments. Always remember we care about you and also your posts help others in strife. Much love Linda xxxxx

[Gaijin]

Thank you, Linda. I enjoy your posts - you are always so cheerful even telling about a depression! I certainly will keep you posted.