Sometimes I wonder if it's my GCA or medication

[twriller]

So I see my rheumatologist on Wednesday but after being on 80 mg of Prednisone for about 9 to 10 days and not noticing a lot of difference and dropping down to 60 it's been another 2 weeks or so and I still have pain in my right Temple. It's almost like it's one particular artery it's always the one spot. Now I know it makes you think could it be something else I know that's what she's going to say but every once in awhile I get a similar pain on the left side which almost confirms to me that no it's not something else. But why oh why isn't the prednisone getting it under control. With so many others it seems like it's a miraculous recovery that yes you have to taper down off of over a long time, but during most of that time the pain is gone and you feel okay. I don't know why I don't. And sometimes after I take the prednisone and during the day I get so fatigued I cannot keep my eyes open but yet I can't fall asleep I can't move but yet I don't sleep. I know many people get a burst of energy from prednisone and I never have ever, no matter what I've taken it for over the years I've never had that reaction. On a somewhat positive note my back pain from my compression fracture is finally starting to feel a little better. Still hurts to walk and stand but hopefully as time goes by that at least will clear up.

[Hidden]

The pain etc is controlled if you are enough pred for pmr and I presume similar to gca. I know it can take a month or so to get gca under control and I have seem those with gca seem to have some head and eye pain for a while. The problem to seems to be some Dr's don't focus on getting the pain relieved as much as possible. As soon as you feel a bit better they drop 10 to 20mg or whatever. If you are still having head and eye pain you need to tell the rheumy. Some people have to go up to 100mg.

I hope it starts to ease a bit as you hit a month. Try not to Stress as much as possible and rest. I did read a paper somewhere about people with gca being advised to wear sunglasses. Feel better soon. 🌻

Ps you had a positive biopsy so they should get it under control fully. Is some of the pain with the scar still?

[twriller in reply to Hidden]

Thanks Poopadoops, yes the pain is around the biopsy area but also up further into my temple from the front of my ear where the biopsy was done just wish I could be more typical like she even wants me to be. Actually when I got PMR 6 years ago it was the only thing in my life that I can remember that was diagnosed treated and it worked. Yes I had to go up and down on the steroids I'm settled at 5 the last year or so but that took care of it. Now I'm back to having something that's not reacting typically and it's not taking care of it. Thing is just as I'm writing this I got a slight pain on the left side in the same area which did not have a biopsy. And yes I wear sunglasses a lot sometimes even indoors for the last 11 years my eyes have been sensitive since I was diagnosed with Sjogren's syndrome.

[PMRpro Ambassador in reply to twriller]

Remind her that the bell-shaped curve means that there is a large proportion of patients who are "typical" - but there are little pockets at each end who are very atypical. Someone has to be there ...

[Devoid]

For at least a few weeks following biopsy I experienced pain which felt like the blood was still trying to flow through the artery and causing pressure, I have been on steroids since June and methotrexate for the last 13 weeks, now waiting to start biological treatment as not responding well to treatment, my consultant said this can be the case in about a third of gca/ LVV cases

[SnazzyD]

Hello, I don’t know about the pains but I want to say that not everyone feels energised with Pred. Even on 40mg I felt uncoordinated, sleepy and groggy after Pred for a couple of hours. I couldn’t function so I used them as sleeping tablets and settled for waking very early when the stimulant bit came in. It wasn’t useful stimulant either, I just felt wakeful, jittery and weak.

[Devoid in reply to SnazzyD]

Hi can I ask at what dose did the jittery feeling stop for you? Or do you still have it. I’m never sure what is the medication and what’s the illness, tia

[SnazzyD in reply to Devoid]

I really can’t say when the jitters stopped but I think the worst of the symptoms were above 20mg for me but that was way better than 40mg. I was convinced it was Pred because it was perfectly timed after the dose. It was a slow disappearance, the sort where one day you think you’re better then a few months later you think, “now I’m really better, I wasn’t then” and repeat. Below 10mg was the beginning of some normality but then I got the low adrenal function causing a bit of anxiety.

[Devoid in reply to SnazzyD]

Thanks for getting back, I am on 25 pred and methotrexate weekly , soon to be commencing tocilizumab as not responding well to steroids, hopefully some improvement soon

[SnazzyD in reply to Devoid]

It’s difficult to see the wood for the trees when you’ve got more than one powerful drug on board.

[Sho-Sho]

I was diagnosed with GCA in August 2016, put on 60mg of pred, stopped acute headache pain overnight, then had a biopsy which confirmed the diagnosis. For some time after had pain where the biopsy was taken and still do today when I get tired, but I did have CT scans on my head when I initially went into hospital so I did know that the pain was to do with GCA.

If it's any comfort I never felt energized on high pred, quite the opposite, for the first 3 months I was utterly fatigued and had to rest most of the day, my husband did all the cooking for nearly a year, and I still have to rest a lot - I am now on 6.5.

It's such a difficult condition to manage as everyone reacts so differently to the drugs.

Good luck.

[Marijo1951]

I started on 60 mg pred on 31st July 2017 after being diagnosed with both GCA and PMR. I found that the pred dealt with most of the pain and stiffness but did nothing for the deathly fatigue. However the pred complicated matters by giving me severe insomnia. Like you I had next to no energy during the day, but I also couldn't sleep at night. I found that as my pred dose diminished, my night-time insomnia also lessened. I'm on 7 mg per day now and I have probably one bad night per week. However the daytime deathly fatigue continues much the same. I assume this is one aspect of autoimmune conditions that just has to be coped with as best as possible.

[navejasjoe]

My wife's experience with Prednisone is for PMR and not for GCA. When she was diagnosed with PMR 3 and one half years ago, she was put on 15mg. It took almost 3 weeks to feel some relief, but it took her a total of 2 months before she felt total relief. Other people on this forum have stated that they felt relief almost instantly. That was not the case with my wife. At one point, her first rheumatologist had her taper down to 3mg after only 7 months of diagnosis. That was a big mistake! She went back to ground zero. The next rheumatologist put her back on 12.5mg. That was 2 years ago. She has been on a very slow taper. She is down to 10mg daily, still not feeling totally great, but very much bearable.

Joe

[Touting]

I've had the same problem they can't seem to get control of my GCA ,I've been. Up and down with predator 18 months it's seems like forever so I do sympathise.