Have had GCA a bit over a year now. I posted a few weeks ago that I'm strongly suspecting the addition of PMR. (Trying to sort out what to attribute to circulatory issues from gca and possible pmr. ) Could you all please share what this emergence felt like for you? Im experiencing pain and aches deep within the shoulder joints, wrists and hands...neck muscles get sore... Legs and hips kill after a very short walk and stairs are brutal. My feet tend to fall asleep easily, hurt, twitch and spasm when I sit down without elevating them: thighs also start to carry on when sitting.... Every night in bed, my calves and get feel crampy and warm.
Isn't this fun....
Written by
Blurry62
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All that you describe, plus a genuine pain in the arse, I suppose the central area of the pelvis that made it very difficult to sit down. I'd never felt that before. Also there was incredible stiffness - I couldn't get down to open the oven, while it was a major disaster if I dropped something on the floor, but at the same time reaching up to a high shelf was impossible. The day started with about 20 minutes getting out of bed, 30 minutes getting dressed and the rest of the day in exhaustion.
Hopefully PMRpro will read this, but in the meantime go to this link and read the article that PMRpro wrote about 2 years ago.
Also get your Vit D level checked, low Vit D causes aches and pains just like PMR. I got the pain and yes it was lovw Vit D, 40,000 units per day then blood test one month later and 20,000 for 5 days. Yippee Vit D up to the mark. I have taken a maintenance dose (buy the from Boots about £5 for 90 tablets since then and Vit D has held steady.
Now for the link: pmr-gca-northeast.org.uk/gr... then click on Summer 2016 and page 11. Read the article written by PMRpro title
"Some Add-Ons to PMR: Myofascial Pain Syndrome and Piriformis Syndrome"
If you go to page 10 then you can read about PMRpro.
Dr called to say he wants me to try to reduce prednisone by 2.5 ( I'm on 25) and try taking tylonol for head and body pain... Until I get an MRA to check for blood flow etc... That's in a couple weeks. I'm going to reduce by 1 for a week or so, then the another one mg. --- go more slowly. I know my body.
I've been on significant amounts of pred for over a year and he is concerned about that amount of time.
At that dose you SHOULDN'T have any PMR symptoms - it is the top end of the range for PMR management. That doesn't of course mean that it is enough for you but it does also call into question PMR.
Have they ever done a whole body PET scan? One of the things that can make it all harder is having LVV (large vessel vasculitis) - can cause PMR symptoms but be more inflammation. Do you have raised ESR/CRP?
I suppose it is possible but I would have thought you'd have felt worse at higher doses. Yes - my blood tests have rarely been raised and when they were they still hovered within the normal range, just in retrospect we realised they were high for me.
I'm on 25 mg ... Rheumy specialist suspects a flare. Ask this just started materialising in the last few weeks... I had the vit D deficiency awhile ago. Last time it was checked,I was good. Still doing 5000 every other day. So the treatment for Pmr is also prednisone?
My legs and feet really hurt. I can barely do my shopping. Everything is so hard to do: legs don't want to take me anywhere:they're always screaming to lay down. Today, my for year old grandson lifted the laundry soap and jugs of almond milk into the cart/vehicle for me. I wanted to cry. My body is in such distress.
25mg is the top of the range for starting dose for PMR patients - but you sound as if you have totally untreated PMR, IF that is what it is. And that makes me a bit sceptical it would be PMR.
Did he say WHAT is unusual about your case? And what qualifications has he if he describes himself as a vascular specialist? The "vascular specialists" I have come across, and worked with in a couple of cases, didn't necessarily know much about vasculitis as we mean it here.
He was recommended by the vasculitis foundation. Recognized as the most knowledge ad's experienced GCA doctor in the region. (?)
It's 6 a.m. And I'm listening to many body as I wake up. Temporal headache, hips mildly aching, feet still hurt like I've been on them all day. My shoulders and Neck hurt as well. I think it's because I had to go to the grocers yesterday. My body over reacts to EVERYTHING I ask it to do.
Every doctor I see thinks my headaches don't present typically. My inflammation markets have always been low. (13 the highest on the day of positive tab) They also seem to have been flummoxed as to why I " don't feel better" over all at any point in this entire process. I don't know either. If I don't know, and they don't know , then who the heck knows?
Ummmm I beginning to think patients should treat themselves with the advise garnered from one another!!!
It makes me want to hop up ( if I were able) onto a great big truck and scream "revolution!!"
They've always been"everywhere" and rarely just temporal. The doctor I had first thought this was atypical and not gca. The specialist disagreed. Obviously, I had gca. Hello, here are headaches... Why want this valuable education rather than something to fight or discount? Who knows... For the first year they were like a pain "stocking cap" and for the last few weeks more temporal than anything.
I'm waiting for a call back from the nurse to file my report. We will see what the specialist says to do.
Temporal headaches do appear, obviously. But the back of the head, the occipital region is favoured by GCA - and one rheumy at least expressed the opinion THAT wasn't GCA. And sometimes you just can't tell where it is. This is biology, humans, they don't fit in boxes.
I guess that's why they see me as challenging. I've had very few "occipital only" headaches. If describe them as cranial...per my research.. Scalp very tender and just wanting to peel the hat off.
Have you been checked for any other neurological or endocrine / hormonal conditions as well?
I don't know how long you have been on 25 mg but that should have helped PMR symptoms , how long were you on a larger dose for GCA and what dose ?
Get those Vitamin D tests done , and if Vit D supplements do not work having thyroid / thymus tests and getting referred to a neurologist would be advisable.
Some people gets increased myopathy or nerve pain as a side effect of Pred , but some people can also have other issues to do with nerves and muscle strength early on because of part of their issue was because of thyroid dysfunction or other AI issues affecting neuro receptors.
Not wishing to panic you but GCA for some , especially with other health issues , can take sometime before you get the balance right and until then it feels like trying to ride a unicycle, blindfold , on a tightrope , with a giant sharp clawed eagle sitting on your shoulders , after running a marathon through glue .
But when all the adjustments are done taking into account your side effects and whole body things will improve.
Ayear ago I was started on 60 them tapered down throughout a nine month period. Got tapered off completely..with difficulty... Last Feb...but had immediate relapse....saw the specialist for consult and back on 25'to see how I do symptom wise. I'm supposed to call him this week to report how I feel and he will advise what to do with prednisone. Up/steady/down
Did you mean that you were put back on 25 mg Pred in the last month , how long have you been off Pred completely?
If the Pred isn't showing any positive change yet it might not be just PMR but a return of GCA that isn't being medicated at a high enough dose yet or something else . You did taper down after your first GCA attack quite quickly and say you had an instant relapse .
GCA is a condition that goes into remission rather than being cured per se , so it is possible for it to return .
If you body isn't responding to Pred though , you do need to ask to be seen as soon as possible by your consultant to see if you need any further tests to establish if it is PMR , a return of GCA or something else. You should probably also ask your Specialist exactly what they mean by " Rare " , no matter how Special they are , they are clearly not explaining to you exactly what they mean , what way you are rare and how they think their current diagnosis is and will affect you.
I'm starting to lean in towards the gca being under treated. When the first rheumy kept tapering me I'd tell him about what I read here. He wouldn't get on board. That's when I searched out and found the best man I could find. He is more symptom oriented inn his approach to treatment. I will call him today and tell him I have the head ache. That's classic GCA after all. He will likely raise it...
Has any one ever had break through headaches while on prednisone? Sometimes I'd have a headache and other times not.
This is so "too much." I'm feeling quite overwhelmed.
Yes, started with neck pain for a couple of weeks, then pain in arms,thighs,shoulders,groin and buttocks. Couldn’t do anything, even had to be helped out if bed. Exhausted as well.
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Are GCA symptoms the same each time it returns?
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Are there people with PMR who choose not to take pred?
