new: PMR -GC 30mg to 40?

Dear Dea...you have a double whammies. I only know GCA. I started at 60 mgs after higher at the hospital to get high inflammation under control to say nothing of horrible headaches and jaw clarification. In a short time I had no pain but have suffered with steroid side effects for 16 months. You must stay on a high dose to ensure your eyesight is ok and to bring all inflammation back to normal. Keep in touch, Ann11195

Dea i was diagnosed with PMR this year and started at 50mg per day. Specialist jumped from this to 25 and that stuffed me up so much. Had to see GP after a week and had it increased backup. Bringing down slowly. Now on lower dose as well as taking Methetraxate one a week. Still nit well with pain etc and swollen face hands and feet. Apparently rule of thumb what i can see is prednesone change should be 2.5 mg per 3 days in dose change. Good luck with it.

Hi, Dea: Yours is a very strange story, as you may know from reading this forum.  I am not a doctor (and your doctor is!) but I am concerned by what you describe. GCA is nothing to fool around with.

I have never heard of anyone slowly increasing the dose of prednisone- with GCA you usually go immediately to 60 mg or even 80 mg.  I also don't know why being on prednisone would cause pain all over- if you have suspected PMR one of the ways to confirm the diagnosis is that the pain goes away.  The "moonface" develops more slowly than what you describe. Unless this is an allergy or something, your pain and swelling don't seem like a typical reaction to prednisone.

As you must know by now, the danger in GCA is that the inflammation in the temporal artery can narrow the vessel and stop the flow of blood to the optic nerve or the retina and cause blindness.  If an injection of prednisone is given within an hour the blindness MAY be reversed- otherwise it is permanent.  It is like a stroke, the nerve tissue is deprived of blood and dies.  

If you experience any loss of vision, race to the emergency room! 

If you have GCA, I question whether 40 mg is enough to get it under  control. It seems an unusually low dose, especially if you are still experiencing scalp tenderness and headaches. Obviously we lay people on the forum can't determine whether you have GCA/PMR or not, but if you do I'd say the course of treatment you are receiving is, shall we say, atypical.

Have you been referred to a rheumatologist? 

I hope EileenH responds to you- it is the middle of the night where she is- as she has more experience and knowledge than I do.  I am worried about you.  Take care and good luck! 

 

Hello dea, I agree completely with snapperblue, when it comes to preds, the worry should be are you decreasing too quickly not are you upping the dose too quickly. The symptoms you are describing of eye, head and scalp are symptoms of GCA, not that I'm saying that's what you have. But if that is what you have you should not be on such a low dose. As has been already said the starting dose should be 60mgs or even 80mgs. 

I suggest that you request a referral to a rheumatolist and see what they have to say. Also, if your dr is concerned you have GCA have they referred you for a biopsy? Without sounding rude it sounds as if snapperblue, is thinking more clinically and logically than your GP who us not approaching your treatment plan correctly.

i also suggest that if at any time you are really concerned or anxious about your symptoms or how you are feeling, get yourself along to A&E. Explain your current suspected diagniosis and the treatment plan that has been suggested and indeed they may suggest upping your preds without delay.

regards, tina

Dea, I'm replying to your post as someone who has had both GCA and PMR and is now in remission from both.

Whereas the recommended starting dose of steroids for 'just' PMR is 15mg (occasionally 20 to 25mg but no higher) where GCA is suspected the starting dose recommended is 40mg and above -  this higher dose is essential especially if the symptoms suggest GCA affecting the temporal artery, which carries a risk to eyesight due to the possibility of the giant cells blocking the blood vessels leading to the optic nerve.  

The dose should not be started at lower doses and then increased but I can understand your Dr starting you on the lower dose if you only presented initially with body pain and if the other symptoms you mention of headaches, sore scalp and eye problems arrived a few weeks later.

However, you have now been prescribed a sufficient dose to hopefully get your inflammation under control - it's very early days after just 2 days at the 40mg dose but you should expect relief in your symptoms, particularly the head pain within the next few days.  I was lucky in that my head pain, sickness and vomiting resolved within hours of my first 40mg dose, however, my body pain proved a bit of a different nut to crack!

Unfortunately, the facial swelling is par for the course with GCA and steroids, with some people being affected more than others.  My face swelled so much that my eyes were reduced to slits - I couldn't believe it was me in the mirror!  Your swollen ankles is obviously a side effect of the steroids which can cause fluid retention particularly at the high doses.  Try and include as many known diuretic foods in your diet as possible - asparagus, leeks, celery, garlic, melon and fennel, to name just a few.  If the oedema worsens then do see your Dr for advice - you may need a short dose of diuretics to help.

Your Dr has given good advice to remain on the 40mg dose for 4 weeks - occasionally 6 weeks is needed, depending on latest blood test results (ESR and CRP) and symptoms at the time.

Meanwhile, give yourself plenty of TLC, with your feet up to reduce the oedema, at the same time remaining alert to any new or sudden problem with your vision, in which case seek emergency advice at A&E (emergency room) if in doubt.

There is an excellent book which is invaluable to newly diagnosed patients, 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' by Kate Gilbert  and available from the National Organisation, PMRGCAuk, www.pmrgcauk.com, and on Amazon.  All royalties from the sale of the book are donated to the Charity.  There is another booklet available from the PMR&GCAuk North East Support Group 'Living with PMR&GCA', www.pmr-gca-northeast.org.uk.

Lots of good luck wishes, Dea - this is a long term illness which can try the patience of the best of us, but hang in there, things will improve!

I've had GCA for seven years - horrible headaches, neck pain, fatigue and jaw claudication. I was immediately put on 60mg. pred after my SED was 86 (don't remember CPR #) even before my positive biopsy the next day. At the start of my next three flares I went back to 60mg. My last flare my rheumy had to up me to 80mg and I'm happy to report I'm now down to 7.5mg along with MTX and Actemra. I do have other pain but I have many other issues - PMR, OA, scoliosis etc. as well as fatigue and weak muscles and I sleep alot. I do have a moon face and put on 60 lbs but it happened gradually. I just started taking off my first few pounds and I'm not famished all the time - hooray. Good luck, Jan

 

Don't know what's going on with my computer. It looks like a stutter!