Thanks for all the advice on my earlier post! The neurologist appt was fine. He says I’m too young for GCA (again) and wants to start me on Topomax for migraines. Starting low and increase the dosage while decreasing the prednisone. I’m going to research the drug and talk to my Rheumatologist first. He said the MRI and the MRA look great but wants to do some type of eye exam - VEP - visual evoked potential. They put electrodes on your head and check the electrical signals that travel along your visual pathways. I think it won’t turn up much. I think we are going way off track.
Anyway - my question tonight is did you have PMR and then GCA or vice versa or only have one? I’ve had some weird pains - but they usually last a day. The knee one day - my back one day - tonight is my hips. Should I be worried? Is it the prednisone? My ankles are a little swollen but I don’t know if it’s the pred or the new blood pressure meds?? My feet are tingly and now calves.
I will talk to my doctors - but should I be worried?
Also - went from 40 mg to 50mg yesterday and today because my eye and temple are not behaving. I can’t keep going up - what is going on?
Ugh - so tired - I thought I found some balance and peace but now back to more tweaking. Is this normal?
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Kern1410
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I noticed the first GCA symptoms in March 2017 and the first PMR symptoms in April 2017, so I started both at much the same time. I was diagnosed at the end of July 2017, so I had a 4 month wait for a definite diagnosis but, as I've learned from this forum, I was relatively fortunate not to have to wait a lot longer. My initial dose of pred was 60 mg per day.
I don’t know what to say about your diagnosis plan right now but there are things you can attend to in the mean time. I had GCA only and no PMR so far after 2 years but they can go in any order or not at all.
Are you getting extra magnesium and potassium (via diet). Pred strips you of these causing pains, twitches, odd sensations in muscles etc. At these doses I had to have them without fail
Are you also going very low salt and I mean low? Pred makes you hold on to sodium, causing water retention. Gravity can make it go to the ankles but I also got it around my middle, face and particularly eyes.
Pred can also give you broken veins.
High dose Pred makes one’s mind race making it really difficult when there’s anxiety around diagnosis. This will be increasing stress related symptoms too.
Has the Rheumy ruled out other possible vasculitis?
Re your enormous stress and lifestyle it may be worth reading these. I thought I was having a flare but found it was just these things especially the neck muscle one below. It even affects my eyes a bit.
I am not taking magnesium or potassium. I have added vit D and fish oil when I get back from trip. Can pick up the others as well.
I’m trying hard to do low salt - it’s tough but I do notice the difference.
If pred is supposed to suppress inflammation - why am I breaking capillaries? Literally the last 2 days spider veins have popped up all over my legs??
I am under a lot of stress - and none of this is helping. Like I’ve said in an early post - I have a full time job, a young child, a house and commitments that can / can’t be put off - so definitely I’m struggling.
Am having slight neck pain and my eyes are still bothering me - but my legs are killing me!
Pred makes the veins much more fragile and dilated. The skin also becomes thinner so slight trauma to the tiny capillaries in the skin that you will not have noticed before become visible. You will bruise more easily generally. Another delight that you may or may not get is broken capillaries in the eye. It isn’t harmful but gives one a fright when looking in the mirror to see a very red eye where the white was.
Whatever your diagnosis, you are on high doses of Pred; it’s serious business. Please do your upmost to get rid of what commitments and stresses you can. Powering through this is not a good idea. This is time to start asking for help from any quarter you can putting aside, guilt, embarrassment, and pride. And forget the, “there are people worse off than me” thing too. If you have a vasculitis you won’t be able to pretend you can keep going, the body won’t let you eventually. I know what it’s like; I got aggressive cancer at 41 with two under five kids and no family help.
Thanks Snazzy! I’m sorry to hear about your diagnosis. It is hard to juggle kids, commitments and everything else when we are just trying to keep it together. 😪
I think since I don’t have a formal diagnosis- my family, friends and co-workers are not taking it seriously. They think I’m crazy running from doctor to doctor.
Don't get me started! We actually had/have someone on the forum who had been dx'd with Takayasu's and at some point after her 50th birthday she happened to notice the dx was now GCA. When she asked why she was told it was because she was now over 50. Same disorder, no other changes. Only the name had been changed to confuse the innocent ...
All the medical literature actually says it is more common in over 50s - which is NOT the same as saying it doesn't happen in under 50s and there are several papers warning about missing diagnoses because of age.
Remember - out of the 4 markers they are looking at only 1 is slightly elevated. That and including my age is why they are ruling it out. It’s symptom based at this point. But no one can give me a good reason why the pred keeps the pain somewhat away. I feel
the head pain and eye pain are adapting to the pred and I keep upping it. I was fine on 30 then went up to 40 and now back at 50 - still having slight head pain but definitely the eye pain. I’m going the wrong way!!! I don’t want to go up to 60 and keep having issues. I am calling the doctors today. We’ll see......
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GCA or Dry eye pain
New to group and looking for advice
PMR diagnosis June 21 - pain in head today
GCA? or something else?
