Quick question - which comes first or next?

[Kern1410]

Hello all!

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?

[Kern1410]

Also want to add - I’m having tons of broken capillaries showing up on my legs the last few days.... 😮

[Marijo1951]

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.

[SnazzyD]

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.

healthline.com/health/stern...

ukfibromyalgia.com/what-is-...

[Kern1410 in reply to SnazzyD]

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!

Thanks for your advice!

[SnazzyD in reply to Kern1410]

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.

[Kern1410 in reply to SnazzyD]

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.

[SnazzyD in reply to Kern1410]

Have you tried to explain to anyone how it truly is in your world currently?

[jinasc]

How old are you?

We know some people with GCA, the youngest being 23 when diagnosed. A couple in their 30. s.

[PMRpro Ambassador]

Do remind your doctors that Takayasu's is the diagnosis for under 50s but they are to all intents and purposes the same!!!

Some people have symptoms of PMR, some people have symptoms of GCA and some have both. It does depend on which region is affected. Fig 1 in this

onlinelibrary.wiley.com/doi...

shows how the different versions overlap and Table 1 summarises the sort of symptoms seen.

At the dose you are on you shouldn't be experiencing PMR-type pain. Is this joint pain you are having?

[Hidden in reply to PMRpro]

I can't understand why that hasn't been considered given the too young approach. Surely drs know this, or at least can find out!!

[PMRpro Ambassador in reply to Hidden]

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 ...

[Hidden in reply to PMRpro]

Terrible. I did link to comparison on one of kerns others messages.

[Kern1410 in reply to Hidden]

I think at this point the only one listening is the Rheumatologist. I’m emailing him all the links.

[Hidden in reply to PMRpro]

I remember someone in late 40s being rediagnosed or should I say diagnosed when I joined in 2016.

[PMRpro Ambassador in reply to Hidden]

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.

Then there is this paper

thefreelibrary.com/A+24-yea...

(sorry about the ads!!)

[Hidden in reply to PMRpro]

At least someone eventually though out of the box!!

[Kern1410 in reply to PMRpro]

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......

[Hidden in reply to Kern1410]

But 4 days isn't enough at any dose. If i reduced from 6 to 5 to 4 every 4 days. My body would kick my arse.

[Kern1410 in reply to PMRpro]

It’s random and short lived- one day knee, one day middle of back, one day hips.

[PMRpro Ambassador in reply to Kern1410]

Has no-one thought of palindromic rheumatism?

[Kern1410 in reply to PMRpro]

Link?

[PMRpro Ambassador in reply to Kern1410]

arthritis.org/about-arthrit...

healio.com/rheumatology/rhe...

Not an undisputed diagnosis - but you can google it too.

[Kern1410 in reply to PMRpro]

Found it - read it. Could be. Only treatment is NSAIDS - tough to diagnose. I will let him know.