Just been Diagnosed with GCA

I already cut carbs, being Diabetic & as for exercise, due to my size & illnesses, this is very hard as I can hardly walk. I already eat plenty of veg but also have to watch some of thise because of carb content. I am already doing my best with diest & just hope that I don't put too much more on as that isn't good for my health either :-/

 

Not everyone gains weight from pred, like all the other side effects not everyone gets them. That may be true for me, even if I did not go through my simple carb idea I may just be lucky. 

Yes, breathlessness is a known side effect of pred. It isn't quite clear why but if you are breathless it is most likely the pred rather than a cardiac problem - which your average GP will assume and send you for cardiac tests! You have also to bear in mind that GCA is quite a serious illness really even though there is little to see and that alone will make you feel poorly, like flu. GCA can also affect the arteries in your chest around your heart and lungs which then reduces the oxygen supply to the rest of the body so that when you do any exercise at all the effect is as if you have just climbed a few flights of stairs. 

With my PMR, and only starting at 30mg, and have reduced quickly down to 12mg in only 3 months I'm now finding I get a little breathless if I up the pace some days.  Up to the start of PMR I was a very active fit 74, walking and cycling and even going up/down mall stairs and not using the escalators.  I put it down to all the medication I'm now taking as I was only on one tab, at a very low dose for Hypertension for the last 10 years, and all my readings are just below borderline or sometimes less.  Major suspect, I believe, is the preds as I was not prescribed the other tabs to counter the side effect until 3 weeks in and I noticed a slowing of pace and breathless within those first 2/3 weeks?

I remember several people complaining about how they couldn't "up the pace" and felt they were crawling along the street! Like you, many of us were fit and active up to PMR - it messed up my skiing good and proper - took me weeks to get to the same level as I'd started each season at! I've had 2 seasons with no skiing - but I really feel up for it this year providing the cardiologist has no objections.

Same here. I was active...cycling, jogging until 3 months ago when I was diagnosed with PMR.  I was wondering why I had pain in my shoulders and back, and now I cannot walk fast.  I was recently prescribed 30 mg of Prednisone by my GP with a taper for a month.  Hopefully, I can go back to normal and do not have to walk slowly (because of pain). I was in the habit of always walking fast.  Even my son would complain....don't walk so fast, Mom!! :-)

Hope you can go skiing this season in the beautiful Austrian/Northern Italian mountains!  It is so nice to keep active and moving.......I miss it so much right now.

Erika - is that all? Pred for a month? That will not work if it is really PMR. PMR is the symptom of an underlying on-going autoimmune disorder that causes vasculitis in the smaller arteries so the blood and oxygen supply to the muscles is compromised. As long as the autoimmune disorder is active - you will have the symptoms unless you are taking a low to moderate dose of pred.

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

The final link in the first post of this thread is to a paper presented in Edinburgh by one of the top PMR groups in the UK and is aimed at GPs who are managing patients with PMR to help them do so better. Far too many think a short burst of pred like they use for other illnesses is enough - it isn't and it actually causes long term problems. If the pred dose is yo-yoed it seem to make subsequent reductions more difficult - that has been known for a long time. It occurs to me it is a bit like using antibiotics - the body gets used to the pred the same way the few left-over bugs get used to the antibiotic and so the next time you need more to do the job. Eventually it doesn't do the job.

Your GP shouldn't be offended at this paper - it was designed for them.

Eileen, thank you for your input.  I will copy his Prednisone prescription he gave me a week ago:

30 mg for 3 days

25 mg for 3 days

20 for 7-14 days

Depending on how the flare is

15 mg for 7 days

10 mg and hold

I would think taking off 5 mg every time would be too much.  I have been taking off  2 1/2 so far, and I am on 25 mg total for the day.  I am improving somewhat and the pain in my back is less but still there.....and I kind of "waddle" when I walk --- not comfortable.

THANK YOU for giving me your opinion and advice about my GP's prescription, and if this one is going to help my PMR problem.

Erika

 

Personally I'd have thought he might be better letting you stick at 15mg for a few weeks rather than just one week - and I think  you are very right to be concerned about reducing always in 5mg steps even though it is a flare. Several ladies found that after a flare it was difficult to reduce in the steps their doctors wanted them to use and were in despair. We suggested 1mg at a time from 20mg in their cases and it worked brilliantly - in fact they were the basis of the "dead slow and nearly stop" thinking.

You say a total of 25mg for the day - in PMR the best way to take the pred is all in one dose as early in the morning as possible. It has the biggest antiinflammatory effect and the effect usually lasts 24 hours OK. For a few people it doesn't and thena  good solution is 2/3-ish in the morning and the rest in the late afternoon/evening.

Ah yes - the PMR waddle! A well known diagnostic feature! I goes eventually! And the back pain may be an add-on and not just the PMR. Worth thinking about.

THANK YOU - THANK YOU, I appreciate greatly your input.  I will take the 25 mg in one dose tomorrow morning.  Would you think I should reduce by 2 1/2 mg for a week (or how long?) until I reach 20 mg. and then reduce with 1 by cutting the tiny 5 mg pill four times!!!:-)  I guess, one has to do this to reach the amount.

Once I reach 15 mg, I probaly should stick with it for a fee weeks as you suggest.

I did show my GP the website with the title SELF-ADJUSTING STERIOID DOSE WITH PMR.  I highlighted a few pertinent questions and answers which he read.  I will next time show him the one guideline you suggest.

Actually to give him credit, he was the one who diagnosed my PMR because of alternating shoulder/arm pain and girdle/lower back pain. I can see my Primary Care Physician more often.....even if I call him the same day.....He says he has quite a few PMR patients.

My RA doctor was not sure about it when I last saw him because of my ongoing RA.  He thinks I should stay with 5-10 mg of Prednisone WITH PLEQUENIL.  I am sure, this is not going to resolve my PMR problem.

This can be all confusing.....and I apologize if I do sound like it.  But I am so new to PMR, and your amazing website with knowledgeable input is greatly appreciated.  Most of all....you can understand as you have experienced the same and can give guidance.

With thanks,

Erika

You could ask your GP to prescribe you 1mg tabs

 

Oregonjohn has said it - you don't HAVE to work on 5mg tabs, there are 1mg tablets to make it easier.

Using that link I gave you you will find my reduction scheme further down the thread, posts 4 and 5. If you can't get the 1mg ones use that scheme to very slowly reduce using 2.5mg at a time - it spreads it over a few weeks, it makes it less of a shock to the system. 

In the UK many of us are managed by our GP/PCP, some never see a specialist, and that does make decisions at short notice easier. They see us at our worst probably - and NEVER gloss over how you feel. If you say "I'm good" they will choose to believe you. If your PCP has other patients with PMR why not ask to put up a notice to get in contact - form your own support group. And compare notes. 

Much of this is trial and error to see what suits you best - we can give you pointers, we've already been down the road. But in the end it is a case of how YOU react both to PMR and pred. It sounds as if your RA doctor can't see the line between the two - your PCP possibly can. Of course it is confusing - no need to apologise!

THANK YOU - it is so true what you recommend.  I will print out the  reduction scheme for my doctor and will hand it to him.  Very much appreciated!

Thanks, I will.