Prednisone or GCA flare

[Mstiles]

Well it’s 3 am over here in California and I’m up staring in the mirror with a big puffy face and neck and looking at my sorry hair which I’m losing more of.

I’ve been trying to sort out what’s going on between Graves’ disease and PMR/GCA, having difficulties getting in touch with my rheumy, etc.

I saw the opthomologist last week and no damage seen. But last week with symptoms I upped dose from 40 to 45 for 4 days, then back to 42.5 from Saturday to yesterday - 3days. The Head symptoms of some pain, jaw tenderness, horrible tinnitus gone. But now all of a sudden my face and neck have blown up overnight with swelling, and more hair loss. Could this be some kind of reaction to the prednisone? 45 is the highest dose I’ve been on.

I was diagnosed at the beginning of January with just headache and PMR symptoms, no visual symptoms of GCA, and put on 40 mg prednisone. Been on that dose ever since, 6 weeks now, with one short-lived try to reduce to 30 in Jan. After 2 1/2 weeks, and then another try at beginning of Feb to 35 mg, which led to going back to 40, then 45, and the present problems of swelling, etc. I finally see the rheumy this week on Thursday.

I’m waiting for blood test results in sed rate and CPR. My last thyroid tests at end of January were in range but shifting quite a bit from previous tests.

Sundayvwas my sister’s birthday and I ate lots of cake, ice cream, stuff with gluten and who knows what else in it, which I’ve been not eating, could this be causing may face to blow up? I feel like my cheeks are going to explode. I hardly recogognize myself anymore.

Thank you for listening

[northwesterner]

I have found that sugar is my enemy more than ever before. I am trying to eat more green vegetables and no sugar at all. I feel better if I can just stick with that but my will power is low when sweets are right in front of me at occasions.

[PMRpro Ambassador]

It is possible that the birthday party stuff could be causing fluid retention (carbs do that and how much of the food had salt and "stuff" in it?) and both GCA and pred will also lead to facial swelling, a lot of it fluid. How long have you had Graves disease? It too can lead to facial swelling.

[Mstiles in reply to PMRpro]

Ithanks PMRpro

Yes, a lot of sugar!

I was diagnosed with Graves last summer and was on Methimazole for 4 months. Looking back on all this I think the PMR was going on then too reading about the symptoms on this site. The thyroid levels were in range in December, and I went off the Methimazole. When the PMR/GCA was diagnosed it was confusing which symptoms were which. (More info in profile).

[Mstiles in reply to Mstiles]

Could the recent change in prednisone dose to 45 and now 42.5 have caused thi swelling too?

[PMRpro Ambassador in reply to Mstiles]

The change is unlikely - but it is a high dose and that may be the reason, or part of it. All the small effects can add up to a lot.

[Mstiles in reply to PMRpro]

Hard to tell what’s going on sometimes, especially with prednisone brain!

I just got my blood tests back and sed rate and CRP are in range, a bit lower than last time even. I’ll see what the rheumy says on Thursday about a taper plan.

Thanks PMRpro

[SheffieldJane]

You really are having an awful time of it - enough to make anyone head for ice cream and cake - then you get so punished for it.

I have had Graves’ disease since 1984 and haven’t given it much thought since definitive radio- iodine treatment and Thyroxine for life. I think however, that is is adding another dimension to PMR. I feel pretty terrible in the mornings these days until I have taken Thyroxine and Prednisalone and some time has passed. So terrible that it is hard to describe. I am trying to get to 6 mgs of Pred and am on 125 microgrammes of Thyroxine.

It is really difficult to sort out where your symptoms are coming from and what is causing them, you feel like you are shouting “ help” from the bottom of the sea sometimes. I need a long talk with my Rheumatologist, I missed an appointment because I was in Australia in December and another hasn’t come through. I expect you go to the bottom of a pile if you cancel an appointment. I didn’t mean to make this all about me - sorry. I am glad your awful Tinnitus has gone.

[PMRpro Ambassador in reply to SheffieldJane]

Have you ever tried taking your thyroxine at night? There are some very interesting studies showing it improves management. Might improve your mornings.

I like our system here - you get the script for the next appointment and you go to the "Check-out" (cashier's office) to make the next one. I asked on Monday if there was any chance of bringing one made for 3 weeks time forward - "Certainly, tomorrow afternoon????"

Which has been wonderful - listened to, low back pain being managed to avoid major flare - AND I already have the script for the next appointment!

[SheffieldJane in reply to PMRpro]

I will try taking Thyroxine at night. I haven’t ever, because I linked the drug to poor sleep. Thanks for the tip. Sorry about your low back pain, glad it’s being nipped in the bud.

I think we should all come to Italy, it sounds better in many ways. When my son was a little boy he was larking about in Venice and fell into a stone statue, he cut his head badly. Within moments paramedics were there treating him so lovingly. He got to ride in a speedboat to the hospital where he was stitched up by a George Clooney look -a - like and fussed over by nurses. All that cost me £15.00. I put the money in a machine and got a ticket out. Incredible!

[Mstiles]

I know, what is causing what symptom? Sorry your mornings are crummy right now!

My face swelling and a little soreness in the cheek are new fun things! Blood tests both for GCA/PMR and thyroid are in range, so hopefully it was something I ate at the party, or going above 40 mg caused it. The thyroid levels are fluctuating some though. The endo wasn’t too informative about what the prednisone and PNR/GCA were doing to the thyroid.

It would be nice if the Endriconologist and rheumatologist were in touch. I see the rheumatologist tomorrow, finally, and will definitely have him look at the swelling.

Thanks for listening Sheffield Jane. Hope you feel better soon.

[Carrollee]

Dear Mstiles. I can sympathise I had the fat face/cheeks and neck that seemed to appear overnight. So uncomfortable like someone had taken a bicycle pump to my face and neck and forgot to stop! Painful to touch as well due to the speed of it. People I hadn't seen for a few months walked past me or didn't recognise me if I walked up to say hi. I couldn't wear my favourite necklaces etc. 😳 Anyway the good news is it goes away as you reduce and if you cut out carbs. 🤗 I had Graves' disease years before pmr/GCA and managed to get shot of it after 18 months on carbimazole so I was one of the lucky ones where that is concerned and you could be too. I did lose some hair during the treatment I seem to remember but not loads. Seems a few on this site have or have had Graves. Perhaps write down all the symptoms that are new and troubling you and see if you can get either the rhuemy and/or endocrinologist to tell you which is which. (They may argue over them of course) 🙄 We all have weird and wonderful symptoms peculiar to ourselves or familiar to all. Sometimes something is really distressing me then I read a post and see that others are dealing with it as well so I don't feel so alone or stressed. All the best cc 🤗 ☀️

[Mstiles in reply to Carrollee]

Thank you Carolee, yes this site and everyone who shares their experiences help so much! I’m slowly realizing how variable this disease can be in all aspects which only makes sense since we are all different.

I was able to get off the Methimazole after only 4 months, but keep checking the levels so far OK but fluctuating within range.

Seems the face and neck swelling blew up almost over night when I increased prednisone from 40 to 45. Uncomfortable and not too pretty!

[sondya]

I had the moonface. Most of the suffering effects were blamed on prednisone. These will go, said the docs as dosage is reduced. And after a year, they were right. No jaw pain, no moonface, temporal unease, dry eyes, instead of losing hair, it went curly! My uncontrollable appetite has gone too. I've lost 20 kilos without any change to my diet. I love chocolates, ice cream and a lot of other naughties that would make the health-conscious have a traumatic fit but my docs did not encourage me to give up any. They tell me GCA is over as well. Just a few mg of predisone to reduce now. One mg per month, two more to go. And I am feeling 100% better. I relied on my GP and the hospital rheumatologist and a very good vascular support group to guide me through this disease. Plus advice from forums gave me hope and assurance that it is manageable, treatable and I'm wishing like hell it is curable.

I wish you the same, Mstiles. Cheers from New Zealand.