[b]Need Clear description of these diseases please[/b]

[jarn]

PMR = sore/stiff muscles (very tired achy muscles in shoulder and neck area.

GCA = visual problems? I started with double vision which my optometrist never diagnosed as anything to worry about; next morning woke up blind in one eye.

However, on reflection, I was having trouble chewing (jaw claudication) and losing weight

I raise this question, because many people are complaining of pain and am wondering which pain are they mentioning? Didn't think GCA had much pain. Apologies for not wording this properly, but as I progress with less muscle stiffness, and no real pain, cannot identify with the readers who mention it.

Since being diagnosed with the above, I do still have slight "balance" issues and asking if that is result of PMR or GCA? (am cautious when doing stairs) Then again, could be an age issue as haven't been this old before😂

[DorsetLady PMRGCAuk volunteer]

This link shows how PMR and GCA overlap - as can symptoms, but if you have both then the higher doses required for GCA are likely to mask the typical PMR pains. But as you get lower they can reappear.

academic.oup.com/rheumatolo...

As for not having pain with GCA, I certainly did pre diagnosis-starting with shoulders (which also can be present with PMR), As time went on, I had the classic headaches before losing sight.

Once all symptoms had been controlled, can’t say I had any return of pain during rest of my treatment.

You will see from picture, with cranial GCA/LVV then head and/or torso is affected, sometimes hip girdle, but rarely arms/knees which PMR does.

But like most things, the illnesses haven’t read the guidelines

Overlap

[jarn in reply to DorsetLady]

Wow. This is excellent and will explore a bit further. Much appreciation as usual. This does explain some of my signs, and apparently I started with GCA as it was my neck shoulders which were feeling weak etc. before I had the ONE sharp pain, after double vision. The PMR had been diagnosed a few months earlier, and it was the hips/shoulders. This is terrific and can explain to family. Chimo! Happy Christmas.............soon.

[PMRpro Ambassador]

Most people with GCA have headaches, a proportion of them have PMR as a symptom of their GCA, Remember that the majority of people on the forum have PMR - GCA is relatively rare.

The jaw claudication, like visual symptoms, is a red flag symptom when it occurs. When you are on the correct dose of pred or above it you should have far less pain whichever you have, PMR or GCA, and people with pain are probably struggling with the dose as a result of overenthusiastic tapering - either on their part or that of their doctor. Too many people see only the endpoint of being off pred, instead of being on the right dose that manages their symptoms.

Have you regained the sight in the eye? That in itself can affect balance.

[jarn in reply to PMRpro]

Appreciate your response and no, totally blind with no chance of recovery. So, yes, perhaps also affecting balance. Got back to driving as quickly as possible, and always sure to keep vehicles clear in my mirror. Now as I read various posts, and they refer to pain etc.. don't know which disease they are referring to. PMR provided me with the most discomfort and initially, I thought the Pred was part of it. GCA was only 1 sharp pain, after the double vision, then all okay...........until awakening in the morning, with no sight. (never all the usual symptoms) That's why am curious. So thinking I still have residual PMR happening. Coping and all is good. As everyone else, many thanks and soon, Merry Christmas!

[SnazzyD]

I’m staggered that the optometrist didn’t think double vision was worthy of worry.

My GCA pain in the run up were niggles rather than pain. A bothersome neck muscle pain, sensitivity of the scalp when brushing my hair and an odd sensation on my temple. It wasn’t until the last 48 hours that the scalp pain ramped up but even so, I had had worse migraines in the past. I didn’t have PMR first, so none of the debilitating pain others have spoken of.

Pred made my muscles weak and so my balance went awry. You need to work out if your balance issue is in your head or in your body.

[jarn in reply to SnazzyD]

Nice for a quick response. Thank you. Appreciate your comment about the Pred because that is the answer to my balance/muscle weakness too, me-thinks. After going blind, I did meet with owner of the Optometrist shop and reminded them that they were not "doctors" as such; but were technicians. All done but obviously changed opts! The few days after the high dose of Pred, I literally fell on my bum when climbing out of bed, as was so weak. That is all done and now coping with returning to regular activities as best I can (without pouring good wine over the ridge of my glass)🤭 Just being more careful when driving and walking as kind of blindsided. Ever onward and hoping for less balance issues.

[DorsetLady PMRGCAuk volunteer in reply to jarn]

Oh…I know about spilling things , but soon learned to watch the wine 🍷..have a glance through this - and compare notes -

healthunlocked.com/pmrgcauk...

[jarn in reply to DorsetLady]

Have you ever thought of turning this into a book? You have a good way with words. Quite enjoyed the read and think you are right, about likely not a good thing to have "some" light coming through. My right eye is dead, totally, with not a thing filtering through. Am just amazed at how quickly that happened after a sharp pain the night before. After the report that would still be allowed to drive, I quickly started doing short drives to get somewhat adjusted. Since it is my right eye, I stick to the right=hand side of the road so that I am not worrying about cutting anybody off. Still haven't done well with the depth perception, but c'est la vie. Quite enjoyed your story and continued good luck to you. (don't know how many trolleys I have cut off in the grocery story!!.....don't see them creeping up on the right) sighhh Thanks again.

[jinasc]

You might want to take a look at this in relation to loss of balance.

pubmed.ncbi.nlm.nih.gov/314...

[jarn in reply to jinasc]

Terrific . Thank you for adding to my library In general, balance has improved but when I need to move suddenly, it is tricky: feet seem to get planted. This was an informative piece. Thank you for listening, jinasc.