Have GCA and PMR
Posted , 6 users are following.
I am 58, diabetic for 25 years and was diagnosed with GCA in January 2016 and sent to see an ophthalmologist. When I saw him on a Friday, he said I probably didn't have it. Reasons: too young, had good blood flow, seed was too low (26). I had a biopsy on Wednesday which was negative. When I returned too see him I told him I was glad that I didn't have GCA, but I knew I had PMR. Within a day of being on prednisone, my hip, shoulder pain and stiffness that I had been dealing with since a strange flu I got in October 2014 was completely gone. He treated me like a munchausen patient. I was just merely happy that I could point to something that was causing me such awful pain for such a long time.
My family doc, who was kind of a shyster, kept me on the pred at 20 mg until February, when he encouraged me to taper down completely, since he no longer felt that I had either condition. I did. By march I was off the steroid, and by the end of the month it was like everything was back with a vengeance.
I waited 4 months to se a rheumatologist. In may I realized my glasses which I had renewed from -2.25 to -4 in February were no longer working. By this time I was having constant headaches, jaw claudication, scalp and cheekbone numbness all the time. I went to the emergency room and was asked to read an eye chart. With my glasses on, the big e was blurry. I was put on prednisone again, sent to an ophthalmologist again, and another biopsy, which was negative.
By this time I was able to see a rheumatologist, I just kept calling until they had a cancellation. I explained everything that had happened and told him I know I didn't have GCA, but I was pretty sure I had PMR. He told me then, I was atypical. My sed rate was 31at that time while I was on prednisone for a short time. I had all the symptoms and he felt safer treating me for the condition. Plus, he said that a biopsy could miss an affected area quite easily. So, since July, I've been on 60 mg of prednisone with mild headache flares. I have tapered to 50 mg and the headaches are worse and I have double vision when I'm really tired.
Ive been through tests to rule out other conditions.
One if my questions is: I didn't have any headaches for at least 30 years (suffered from tmj, and went thru successful treatment which stopped the headaches) and these headaches are totally different. Will prednisone help with other aches and pains? Because I have some osteoarthritis which does not respond to the steroids. The rheumatologist said it wouldn't. I hate the steroids, but the pain I go through without is worse than the side effects of using them.
0 likes, 9 replies
JanSP suzan54625
Posted
Suzan,
I'm so sorry you're going through this. I've had GCA for seven years. For my initial incident (had a positive biopsy) and three of my four flares needed 60 mg of pred. My last flare I needed 80 mg pred. The pred doesn't help my OA either. It's now about 1 1/2 years since the last flare and I'm on 4 mg pred + .8 ml MTX and a weekly Actemra injection. All through these seven years I've had headaches but not the terrible ones when the GCA is active and my SED rate is up. My usual SED is between 2 and 4. I've also had PMR with one flare but haven't had it for a few years. Or maybe the pred for the GCA is taking care of it. Jan
EileenH suzan54625
Posted
You call your family doctor a shyster - the ophthalmologist who told you you hadn't got GCA because you were "too young, had good blood flow, seed was too low (26)" is a better candidate for the term. GCA can also manifest in people under 50, and 50 is the age where it should be considered in anyone with appropriate symptoms. There was a documented case a couple of years ago in a 37 year old male in the UK. He definitely had had it - it was found by the pathologist at autopsy. They always get it right.
About a fifth of patients may have normal sed rates, the biopsy is only positive in about 40% of patients and being "negative" doesn't mean you don't have GCA, it means they didn't find the cells they are looking for - and there are a whole load of reasons for that including the fact the GCA that is causing the symptoms is affecting other arteries but not the one they biopsy (there is only one that is easy to get at). If they find cells it is 100% confirmation you have GCA. Not finding them means very little. Your GP shouldn't have left you on 20mg for more than a few weeks if you have only PMR, but if you have GCA it is probably as well he did and the symptoms you describe are typical of GCA (headaches, jaw claudication, scalp pain and visual problems). Thank goodness your rheumy now is more on the ball. I assume you are seeing your rheumy frequently? If you still have symptoms at 50mg - you may need more.
I don't quite understand what it is you are asking. You say "One of my questions" but you have answered it for yourself: pred doesn't really help OA pain, it may mask very mild OA pain but not always, just as the rheumy said.
suzan54625 EileenH
Posted
My family doctor was an ambulance chaser. I for one will never darken the ophthalmologist's office again. After my second meeting with him, he said he would see me in a year. During the appointment, he sat with his back to me and never turned around. When he said he wanted to see me in a year, I asked him to turn around. He looked at me with a surprised look, and I told him Fat chance!
suzan54625 EileenH
Posted
I thinkmy main concern is that I might have something else and taking the prednisone unnecessarily. I do see I do see my rheumatologist every six weeks and I've only been on the 50 mg for less than a week.
EileenH suzan54625
Posted
Oh good for you! I wish I could have been a fly on the wall!!
I've never heard a doctor called an ambulance chaser - just lawyers!
Is it possible that your pain at 50mg is steroid withdrawal? Some people simply can't cope with that big a reduction, even at that level - top experts said some time ago that a redeuction of pred dose should never be more than 10% of the current dose so even at this stage 5mg would be far more suitable and might make the difference.
Steroid withdrawal pain is often described as "rheumatism" but in many illnesses it is more a return of the symptoms for which you are taking the pred. My granddaughter takes high dose pred for asthma and they tried to reduce the dose in big steps - immediately the asthma symptoms came back. When she tried in smaller steps - success. So if the symptoms don't improve over the next week it might be worth discussing that with your rheumy - using smaller reduction steps isn't always slower, especially when it works and the patient feels better!
ros85177 suzan54625
Posted
Hi suzan...I feel so sorry for you. I'm 66 and have multiple joint arthritis including shoulders and back then developed GCA around 3 years ago. My headaches were terrible but once I got onto 60mg pred...all my joints improved. I was really pain free for months until starting to gradually reduce the steroids. Now the joints are my main problem and I'm convinced it's mechanical rather than muscles.....very confusing when it's shoulders. The GCA seems to be in remission and I'm off steroids but seeing orthopaedic surgeons about the joints. Hope you get sorted... being confident in your specialist is SO important. Good luck
suzan54625 ros85177
Posted
Good luck to you too. I told my mom the other day that I was so tired of this! I'm still wrapping my mind around how immense GCA is.
Then I'll look around the world and realize that my pain is small potatoes compared to someone else. And I can look at my situation and feel truly fortunate.
Anhaga suzan54625
Posted
EileenH ros85177
Posted
PMR can be part of GCA - and while the GCA part apparently often goes into remission relatively easily and the symptoms don't return as the dose gets lower, PMR can be a VERY much tougher cookie - and a low dose to manage the PMR symptoms is needed for a lot longer.