I'm a 69-year-old female.
Diagnosed in August with GCA/PMR.
My doctor has been gradually decreasing my prednisone. Currently, I'm at 12.5mg. Have been on this dosage since Thanksgiving.
I am having problems with headache's & soreness in my scalp.
I have neurothopy in my feet & have been taking gabapentin for about 2 year's I'm at the highest dose of it 2400 mg. daily. Recently my feet have been bothering me at bedtime & I only noticed it once the prednisone was reduced.
I don't know if there is any correlation here or not. Just find it to be odd.
Does anyone else have foot problems with GCA/ PMR?
I see my rheumatologist on Monday. He is a very good doctor.
I go to MUSC (Medical Univ. Of S.C.) one & one have hour's from home but worth the drive.
Didn't want to bring it up & look like a fool if there is nothing to be concerned about.
The fatigue is really crazy with this autoimmune disease.
Prior to the GCA/PMR diagnoses, I was diagnosed almost 2 year's ago with Sjogrens Syndrom...yet another autoimmune disease.
Just more of a curious question.
My feet have really been bothering me at bedtime.
Thanks.
I have GCA and my feet get very painful if I sit still for a long time, and especially at night (when you're not moving your feet). I find moving and circulating my feet eases the pain, so I imagine it's a circulation problem. But its a fairly recent problem (about 6 months or so) and I was diagnosed as pre diabetic during the summer. I spotted the symptoms myself and asked for a bloodtest. I had severe itching on feet and ankles, together with painful soles of feet.
I have read somewhere though that pred can cause circulation problems, so I wouldn't worry about asking your rheumatologist. There are so many other medical issues that can be caused by pred or lowered immune system that it's worth mentioning.
I went on a Low GI diet and have lost all the weight, plus more, that I'd gained since starting high doses of pred just over 3 years ago. I'm due another bloodtest in about a month, so hope my blood sugars are ok now.
I wonder if you are having a slight flare at the moment? I managed eventually to get to 7mg pred, but flared, and I'm now slowly increasing the pred to see which dose will stop the flare. At 9mg right now, but suspect I'll need to go higher, as my CRP is not moving from 11-12 and I'm feeling quite unwell. I'm so reluctant to increase too much, as I managed to lose the dreaded hamster face at around 8-9mg and I really don't want it back!
The headache and scalp pain concerns me - they are both signs of resurgent GCA - so do please tell your rheumy. If the neuropathy is being made worst by poor blood supply due to inflamed arteries that would fit with reducing the pred being paralleled by an increase in the discomfort. If you were only diagnosed with GCA in August to be down to 12.5mg already is quite fast - which is fine if you don't start to flare, but not if you do!
So yes - I would mention it all to your rheumy.
Thank you for your quick response.
I will tell my rheumy on Monday.
I think his concern & possibly the reduction with the prednisone was because my face ballooned something awful. I could glance looking down & all I could see was my cheeks. My
face was really big.
I see my rheumy once a month.
I appreciate being a part of this forum because the feedback is so helpful.
You might find the face ballooning would be helped by cutting carbs and salt in your diet - lots of people find that helps. But whatever the side effects - none of them are worse than what GCA can do.
This too shall pass...
I totally agree.
I have finally gotten used to the double take a few people do when my face really.
It has gone down on the 12.5 mg. dosage. I'm concerned my rheumatologist might increase the prednisone on Monday, but whatever happens, I'll do.
This was just so new to me & I was embarrassed but it certainly beats the alternative.
I appreciate your advice, & will follow your advice.
A curious question.
Do you regulate how much prednisone you take?
My rheumatologist tells me how much to take. Don't think he would want me regulating the amount of prednisone.
I see him every 4 weeks & every time I go he does lots of lab work.
The fatigue is driving me crazy.
I also get painful legs from the knee down to my toes. I don't know if it's from PMR or a circulatory problem but mine always happens in the evening before bedtime and makes it very hard to sleep because it hurts so much. However I have found that if I put compression socks on it really helps the pain a lot. You might give that a try. But as Eileen said you need to report your scalp pain and headaches to your rheumatologist.
I forgot to mention to you in my earlier post, but I to have Sjogren's syndrome. It is my understanding that this disease can also cause joint pain. I don't attribute any of my pain to Sjogren's simply because I think my pain comes from other sources. Do you belong to any Sjogren's support groups? There is a good one on Facebook if you do Facebook. And I believe there is also a group for Sjogren's on this site.
I don't belong to a Sjogren's support group.
I am on fb so I'll look into that group.
Once I got hit with GCA/PMR I didn't know what to think because I was dealing with some Sjogress issues. I didn't know if they could be combined or not.
This is still pretty new to me & I've done a lot of research on the GSA/PMR.
I see my doctor on Monday.
Thank you for the response. It really means a lot to me.
Hope you are doing well at the moment. I know it's a day by day thing we deal with.
I will report this to my doctor on Monday.
He already knows about the headaches & sore scalp but I always reiterate it when I talk to him.
It's only my feet that I have a problem with not the legs. I don't know if the compression stockings will be of help But I'll give it a try.
I'm so happy I discovered this group. Everyone is so helpful.
If I'm having a bad time I can read all the comments and know I'm not the only one (unfortunately).
Darlene, i regulate my pred up to a point. I've had GCA for over 3 years now and before that, PMR for 4 years. If I were to follow my rheumatologist's recommendation, I would be flaring constantly, as she wants me off pred as quickly as possible. Luckily, we have come to an understanding that I want to take things slower than textbook tapering. We still discuss my dose and blood markers of course. My GP is also now quite involved, as I'm currently having bloods done at my surgery every 2-4 weeks. She knows little about GCA, but is very supportive.
I think, when you've had GCA for a few years, you learn to taper up or down. I'm not talking about huge increases when flaring, I let the professionals decide, but small adjustments.
Yes, the fatigue is overwhelming and it really limits what I'm able to do.
You are in the US I assume - it would be next to impossible for most of us to see a rheumy every 4 weeks, especially in the UK!
As Susanne says, many of us who have had PMR/GCA for a long time have come to an agreement with our doctors about minor adjustments rather than have to wait for an appointment and risk a flare developing.
In the U.K. it is hard enough to see our GPs every four weeks as it takes that long to get an appointment nowadays. Three months seems to be average to see a rheumie at the moment. My rheumie cancelled in December fifteen minutes before I left the house to go to the hospital and then I was given the new appointment seven weeks later.
Suppose you have to be grateful it was 15 mins before leaving the house and not 15 mins after...
Even here it has been months to get a "rheumie" appointment in the rehab department but we now have a tiny real regional rheumatology department and my first appointment with the Head was only several weeks I think. Then they rang the week before to say sorry, he'd to work nights and the appointment would have to be delayed. Would I mind an appointment with an Italian-speaking... ? I refused - the only reason I was going was to meet the new guy who has his name all over PMR/GCA publications at present 
I only had to wait about 10 days though. It was worth it - haven't enjoyed a medical appointment so much for ages!!! Established all the people in the UK we both know and discussed a LOT!
I must admit I did thank my lucky stars I had not left home and then fought for a parking place at the hospital with exorbitant charges! My current rheumie is a bit of a waste of space anyway. Totally unproactive. I am not sure she knows much about PMR.
On the basis of a first meeting I'm pretty impressed by Dejaco - we'll see how we get on.
Now our hospital is reachable by train: a 5 min walk to the station and get off after 7 mins actually IN the hospital! No need to find a parking space - and if you were further from the station you would park there and catch the train. We have an annual 150 euro 65+ "go anywhere on public transport in South Tirol" - and we are getting our money's worth!! And OH has an appointment next Wednesday in the next hospital down the valley - bus every half hour from the same station to the hospital door in 45 mins. Or take the train and get a bus to the hospital - but that is more complicated. Can't beat it!!!!
I suppose I am really blessed.
I live in South Carolina, U.S.A.
As I said previously I see my rhumey every 4 weeks.
However, (MUSC) University Hospital has a patient portal where I can write to my doctor with questions about meds or anything & I get a response from the nurse within 2 days, so I do write him with questions like this is happening & what should I be doing about it.
I really do like my doctor & I think that makes such a difference in dealing with all of this.
Wish all of you could get into your doctor sooner.
Guess that's why you have learned to go up or down with the prednisone.
"Guess that's why you have learned to go up or down with the prednisone."
Yup!!!!! Self-help!!!!!
I think it depends on where you're at in your GCA/PMR journey, and perhaps also where you are based in the UK, as to how often you get to see your rheumy.
I'm happy with my rheumy. We have a good relationship. I can leave a message with her secretary and she will call me back if I have any concerns. She also sends updates to my GP after each visit.