New here. I was recently diagnosed with PMR. At first it seemed I might have GCA but a biopsy rule it out. Because of that I started at 60 mg and after a week dropped to 40 and then 20. I’d started to feel acheté again as soon as I dropped so my Dr agreed to increase to 25mg. That was pretty good for the first week but now a month in I’m a hey all the time. I’m about to see my rheumatologist for a second visit and I’m anxious. Shouldn’t I be feeling better?
My symptoms were mostly in my hips. Horrible in the morning-stiff and sore. My neck was stiff and my shoulders were tender but something I just ignored. After I started Pred my shoulders started feeling heavy and now I have a hard time lifting or holding my arms up.
My fears are either I have the wrong diagnosis or the wrong dose. Any thoughts?
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Here1am
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My first thoughts would be wrong dose- because it sounds very GCA/PMR like to me.
Unfortunately a biopsy very often gives a false negative result.....if the sample taken doesn’t show affected GCA cells that doesn’t prove they aren’t elsewhere in that particular blood vessel or any other one....just that they aren’t present in piece taken.
The symptoms you describe are typical, and personally I think you need to be on at least 40mg...which is the usual starting dose for GCA when there are no sight issues.
As you are in the US - you might like to have a look at this -
Thanks for the link. Everyone was happy to rule out GSA and drop the Pred level. I have several things going on (preexisting migraines, meds that suppress inflammation from Ulcerative Colitis, neuropathy from chemo) and I am lost in the weeds for what is affecting or a symptom of what
Interesting. I had peripheral neuropathy from chemo from 2005 until a good whallop of Pred for 6 months for GCA and it went. I think chemo and some of the other hormone drugs that caused phlebitis, introduced my body to the idea of blood vessels as ‘other’ and I probably had waxing and waning inflammation for years until 2017 when it went boom.
Hello and welcome. Lots of questions popped up in my head reading this, but here are just a few. What were your GCA-like symptoms? Did they come back when the dose dropped or was it just the hip issues? When you felt pretty good for a week, what activity did you do in that time? What are your symptoms exactly now? Very high doses can really make one feel weak, heavy and rather horrible so it is not surprising that you didn’t feel good. Docs often don’t warn patients about the impending lack of well being before they take a high dose. On the day I took Pred I was fit a lively, but within 24 hours I was a feeble heap and stayed that way until the dose was quite a bit lower.
Another point is that a negative result in GCA does not mean it is definitely negative though a positive almost certainly is positive. This is because the giant calls can be distributed unevenly and the sample being a very small subset of all the cranial arteries can be unaffected. The temporal artery is convenient and not likely to cause harm if a bit is removed, unlike the arteries at the base of the skull or eyes. For this reason, with a compelling history, a person is usually treated for GCA; I was one of them.
At my initial visit I had horrible pain at my temples (but I hat migraines), a sensitive scalp, double vision, and a sudden jaw pain and restriction. I also had an eye exam from my opthmologist who didn’t see any evidence for GSA. All my blood work is normal, but I am on Humira for Ulcerative Colitis. My headaches have improved considerably but everything else is the same.
When I first got on Pred I did a bit more than I’ve been but that’s not saying much. I’m two years out of breast cancer treatment. I’ve adjusted (somewhat) to taking things slowly and resting A LOT. I don’t work and my last kiddo finally got his drivers license.
Right now my hip/back pain is back but not as bad as it was pre-pred. I wake up sore and feeling constricted. Now my shoulders feel that way too. The pain/constraint is there most of the day but it does improve as I move. Unfortunately I have significant neuropathy from the chemo so I can only be up for so long before that starts wailing. Sore if I move, sore if I don’t.
I was on 60 mg if Pred twice for Ulcerative Colitis. Sadly familiar with that.
For a start - having a negative biopsy does NOT rule out GCa. A positive result is 100% certainty that it is GCA but a negative one only means they didn't find what they were looking for, the large cells or signs of inflammation. There are several reasons for that including it isn't present in that bit of artery wall because it forms skip lesions, positive areas alternating with negative ones. They only use it because it is non-essential and easy to get at to do a biopsy. It is postive in well under half of patients with GCA symptoms. Being a "gold standard" does not mean - as far too many doctor think - that it is a very good test. It means it is the one they use in the absence of anything better,
I agree with DL - sounds very PMR-ish but if it is only PMR then 25mg should be enough and it obviously isn't. And shoulder and arm problems could be indicating you have LVV (and even cranial GCA) that needs a higher dose of pred to manage. (LVV is large vessel vasculitis and may be affecting the artery supplying the arms).
I’ve read a good number of your posts and appreciate your info. I’ve answered the two replies above with more info. I went to my Dr after I discovered PMR on line trying to figure out why I feel so bad all the time. Now I’m wondering if this is related to previous problems. I’ve had frozen shoulder in each shoulder (separate and in between flares of ulcerative colitis) and a period of extreme fatigue where it was hard for my to get out of bed. All of these things in the last 10 years so it’s been one wave after another. I feel that all I do is complain.
I wouldn't be surprised if you have had PMR before - it is often misdiagnosed initially as frozen shoulder. It's a bit tongue in cheek but one way of putting it is that as you have a range of autoimmune signposts there - you have Here1am syndrome!
I often say I envisage a/i disorders like a shop with shelves full of signs and symptoms behind a counter. You go in and an assistant gives you a random selection of his wares, sometimes even chucking you one or two more as you are leaving the shop or even sending them on much later - the label the doctor gives you matches the set of symptoms they see most. There is a lot of overlap between a/i disorders and that is seen in the diagnoses MCTD and UCTD - mixed and undifferentiated connective tissue disorder where you have signs of bits of several disorders but not enough of one for it to predominate.
You probably need what a friend with lupus calls a "True Detective Rheumatologist" - but sadly they are a bit thin on the ground
I am just saying welcome...this is a wonderful place to be as you can see from the incredible responses you have received. Nothing to add, just welcome!💖
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