As someone else recently stated, I have been lurking around here for awhile. I cannot even remember how I found this site but it is one of the best I have seen. Great camaraderie, comments and advice. I live in the USA. August 2016 I began feeling not well. My daughter was getting married and everyone I knew blamed my malaise on wedding stress. However, we wrote the check, she planned the wedding and there really was no stress just joy. The wedding was September 2016 and by that time I thought I was getting the flu. When I finally saw my Internist a few weeks later, I had lost a total of 20 pounds, could not stand the smell of food, could not eat, had terrible night sweats and could barely get out of bed. My Internist said that at my age (71 at the time) she needed to consider GCA but also thought it could be PMR. I did not want to take prednisone. Took 20mgs for three days then stopped, still felt terrible so they decided it was not PMR. By the way, I had no PMR type pain. She referred me to a rheumatologist and between the two of them, I had almost every test one could possibly have: PET scan, CT scan, bone marrow aspiration and biopsy and finally an MRI/MRIA which showed definite inflammation of the aorta. I never had a temporal biopsy so my rheumatologist says I have Aortitis and I believe my Internist thinks I have GCA but they both say it does not really matter at this point because the treatment is the same. I did finally agree to the prednisone but I would only consent to starting at 30mgs not the standard 60mgs. This seems to have worked for me. My ESR (Erythrocyte sedimentation rate) went from over 100 to 18 and my CRP (C-reactive protein) went from over 100 to 8 with the standard for the CRP being 5. At the moment with the CRP at 8, I am at a prednisone dose of 9.5mg and I am hoping the CRP does not go back up. I am tested every six weeks. I mentioned this site and the suggestion of going very slow with the prednisone reduction to my Internist and she rolled her eyes and did not agree; my rheumatologist, on the other hand, did agree that once one gets below 10mgs it can present problems so he agreed to the 9.5 dose down from ten. He had originally prescribed going from 10 to 9. Fingers crossed! Hope I have not rambled on too long. Thanks again for all you folks do here.
I'm new here...: As someone else recently stated, I... - PMRGCAuk
I'm new here...
I am so sorry what your going through,but please remember take the time now to say anything you need.(better late then never)
I am doing well at the moment thought I do experience a day or two of real depression occasionally. My guess is that it occurs when I lower my prednisone dose.
Hello and welcome Hono! We love a lurker, especially when they step out of the shadows. You've had quite a journey! Nobody wants to take Prednisalone, but it all we have and it's pretty good at mopping up painful inflammation and stiffness. Of course with GCA don't be too strict about dosage, you are saving your eyesight and may need more Pred before this disease is done with you. You are right to challenge the Internist. Reducing Pred too quickly just sends you right back to the beginning.
If Pred side effects are a particular worry we have found various ways to combat them and live with them. Just ask, if you get any, someone will be along.
I did get a bit worried about my eyesight which was the reason I decided to take the prednisone. I am being closely followed by an ophthalmologist and so far no problems. He did laugh when I told him that my current dose was 9.5mg. Who takes 9.5 he wanted to know. So interesting how some of the docs react.
Hi Hono,
I would recommend anyone with PMR or GCA buying an extra copy of Kate Gilbert's book and giving it to their doctor, I have an excellent doctor who is proactive and opened to learning something new and she appreciated it.
Regards John
If your depression has no real cause ( like your little girl being all grown up and gone) then use the low days to have a complete physical and mental rest, nothing taxing at all. This will be so good for your wellbeing that the following days will be much better. My daughter calls them duvet days - bed - light reading - TV - whatever floats your boat. Don't let negative thoughts take hold, substitute them with a pleasant thought because this isn't really you.
My little girl is going to be 37 and has been independent since she went of to college! And I love that she is just that. When that depression hits it is more about not being able to do (or want to do) anything. Thank goodness it passes at some point.
I have one who is 42 ( child bride - me) She lives in Australia with my two grandchildren and her husband. She went over a decade ago and the hole she left is still there. My 33 year old daughter has gone out to join her taking my other 2 grandchildren for at least a year. My son in his 20s still lives at home. So it's my stuff really.
I do recognise the complete " battery flat" feelings and as I said before, don't fight it, use it as a recuperation time, your body needs it. You do seem to be doing remarkably well! Glad your eyes are being closely monitored.
Lucky or stoic?
Lucky!
Hi Hono, good to meet you sounds like you are doing well. Let your docs laugh, if it works for you it works maybe they will learn something which may help someone else. This is the best help I've ever had. 😊
Your internist may roll her eyes - but someone in the USA told me once some time ago that the Dead Slow approach is almost identical to the scheme her rheumatologist in the USA uses. Anyway - she can't knock it too much: it works well when other approaches don't!
The aorta is one of the arteries that GCA likes to attack - but you can't easily get the biopsy proof so inflammation may be due to GCA or to some other form of vasculitis. The high doses used in GCA are mostly used because of the risk to sight if cranial (head) arteries are affected but often they aren't affected. But pred at some dose is needed because leaving untreated GCA damages the artery walls and increases the risk of aortic aneurysm much later.
my rheumatologist does go slow. Originally he suggested going from 10 to 9 but was very obliging when I suggested 9.5 because of what I have read here. Because of the aneurysm possibility, do you think a person with any form of vasculitis should be on a low dose of prednisone for life? I fought taking it for so long but after finding this forum, I have become much more accepting towards the medication.
I don't know that life-time pred is necessary if the symptoms have resolved and, where it applies, the blood markers for inflammation are normal. I suspect the damage may have been done - and in that case monitoring makes much more sense. If they would do it as the guidelines say. But who knows?
Welcome Hono
You live in a fantastic country, I have done 35 States.
Lurking is fine you are with friends, let the Internist and others roll there eyes as much as they like. Listen to your body and take it easy. You need the drugs
Good luck
Welcome! Where in the States are you? I'm in Illinois.
I'm in Honolulu...
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