Feeling awful

[alvertta]

I was diagnosed with GCA on October 10 2018. I started at 60mg, gradually reduced to 35 by December 25, then after a two week vacation back up to 40mg as my sed rate went up to 15. Too much sugar and alcohol. February 14, with sed at 2, reduced to 35 after consulting my rheumatologist. Since then I feel awful... dizzy, spaced, shoulders and upper arms ache, back ache, tired. Heart rate over 100 if I just walk across the room. Is it the reduction from 40 to 35? Any words of wisdom.. age 71.

Will help. Thank you.

[SheffieldJane]

These symptoms must be checked out by your doctor, it does sound like a flare of PMR symptoms accompanied by Prednisalone side effects due to the high GCA dose. Unfortunately a number of people have both. Do you have a blood pressure machine at home? This needs checking out too.

It may be the steep reduction as you say 2.5 might be better until you get to 20 mgs, then 1 mg drops, always letting symptoms settle before a further drop. Let us know what your doctor says.

[alvertta in reply to SheffieldJane]

My blood pressure is high. On two medications for that. I guess I should take a little more prednisone tomorrow. I will try to connect with my rheumatologist on Monday.

[Merryfield in reply to alvertta]

Dear PMRs. Folic acid great tip. No one is alone with nasty steroid symptoms. I have had to double bp meds to get bp down due to steroids. Was so shaky at 30 mgs pred could hardly write. I feel weird all the time- like being stoned. Also now have diabetes. We are all in this together. Empathy, information and community, if not exactly comfort❤️🌸❤️

[PMRpro Ambassador]

Has that pulse rate been checked out? At that dose it shouldn't be PMR symptoms and anything cardiac needs to be looked at more closely. I have atrial fibrillation due to the autoimmune part of PMR/GCA and it was years before it was identified as such.

[alvertta in reply to PMRpro]

When I was diagnosed in October I had a holter monitor for a week. All good. I mention this at every medical appointment and they all say it is the prednisone. I will ask again.

[PMRpro Ambassador in reply to alvertta]

Did it happen during the holter? If it is that bad they really should take it more seriously - doesn't matter why, it is a problem I would have thought.

[alvertta in reply to PMRpro]

The Holter test was normal. This has just been in the last week. I will get on this tomorrow when doctors open. Thank you.

[PMR2011 in reply to alvertta]

Have they assessed your thyroid? I had similar symptoms (GCA since 2017) on 20mg Pred. Once they ruled out a Pulmonary Embolus (I had had a DVT a few months before) they checked my Thyroid and discovered I was hyperthyroid (Graves disease). Which I think was caused by the GCA. All symptoms taken care of once on meds for that.

You definitely need to get a high heart rate checked out.

[alvertta in reply to PMR2011]

Thanks. Working on it today. Ontario is gripped by a huge storm. Roads closed. Schools closed. No driving today.

[Evercurious in reply to alvertta]

Any better today? Keep us posted.

[alvertta in reply to Evercurious]

Getting a Holter monitor on Thursday. Call in to family doctor. No reply yet. Thanks for asking. Not feeling any better.

[alvertta in reply to Evercurious]

Spoke to the nurse and family doctor today before noon. Doctor recommended I stop taking the most recent blood pressure drug for a few days and see if that helps. Seeing her next Thursday for follow up.

[Evercurious in reply to alvertta]

Sure hope that helps. Shoulder,neck, back ache sounds a lot like PMR, though

[alvertta in reply to Evercurious]

Yes I agree. I was never diagnosed with PMR. I think I have had it for several years and just ignored it, calling it aging and “pushing through”. I had a lot of pain in legs, buttocks and thighs. Then the CGA came along and could not be ignored. Hoping the relief will be fast. We shall see.

[PMRpro Ambassador in reply to alvertta]

I think that may be part of the reason that PMR doesn't figure as a "longer" disease. A lot of patients never report/complain about it in the first place, especially if it is a relatively mild attack, unless it progresses. And even when we do report it, too many doctors don't recognise it for a long time, in my case 5 years plus - by which time for a lot of people it has gone into remission.

[alvertta in reply to PMRpro]

So let me get this straight. I can gave PMR and GCA at the same time? The pain in my right arm is getting worse.

[PMRpro Ambassador in reply to alvertta]

PMR symptoms may be found as a symptom of GCA - whether that is saying you have both at the same time or that they are the same disorder in different manifestations is another question.

[alvertta in reply to PMRpro]

Ok.

[alvertta in reply to PMRpro]

If I still have headaches should I go up in prednisone? Currently on 35.

[PMRpro Ambassador in reply to alvertta]

Not really without speaking to your doctor asap. Unless you were to have any visual symptoms - then more pred and a visit to the ED is called for.

[alvertta in reply to PMRpro]

Thanks.