Newly Diagnosed

[Clarinet1234]

Being treated for GCA. On high dose of prednisone

Apparently my presentation is somewhat atypical. Initially I did not respond to steroids so look looked for infection. Now they have restarted steroids and my symptoms have improved but my CRP which was 200 has come down but stuck at 50.

Although I have improved and my exercise tolerance has improved I am still very tired. Also although my pain is better I am still aware of a hypersensitivity in my scalp from time to time

The care I have received from the hospital has been amazing.

I just find trying to navigate how I manage everything a bit challenging.

Diet, keep blood sugars down etc.

Any support really appreciated

Ps really want to play my clarinet but worry about stressing the blood vessels in my head.

[PMRpro Ambassador]

Hi and welcome!

DorsetLady will be along shortly with her welcome post and useful links. She is the living with GCA guru as she has had it.

Do tell us a bit more - symptoms how long, actual doses and so on, it helps us to help you. Sometimes people need very much higher doses than some doctors expect and sometimes it takes longer to get a response if the dose isn't quite enough.

You are very tired still because GCA is a serious systemic illness - and the underlying autoimmune part is unaffected by the pred so is still chugging away in the background, making you feel as if you have flu. Add to that that I bet the pred has you "wired" and you are trying to do far more than you should be - REST and behave like a poorly person!!! You need lots of TLC.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Sorry but going to ask some questions -

What dose did you start on [on both occasions as a matter of interest]….when did you start second time and what dose are you on now, and how have you tapered? That will help us to advise.

Fatigue is all part and parcel of any autoimmune illness, so you may not have it fully under control - and as you are still getting scalp issues it does sound like that.

Have a look at this introductory posts and also at other patients stories with GCA .

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk....

Provided your GCA is fully under control, then you should be able to play the clarinet from the blood vessel aspect, but holding it in one position may be problematic - something you would be best discussing with your medical team. But I wouldn’t be in too much of a hurry to try it yet… leave it a few months down the line.and then build up gently.

[Clarinet1234 in reply to DorsetLady]

I started on 60mg for 2 days, 40mg for 3 days, only improved my symptoms a little bit, My CRP continued to climb to 200.

They then thought may be it was due to some underlying infection. That has now been ruled out. They restarted the pred and CRP came down to 80 after two days and now stuck at 50.

My current dose is 40. Got bloods tomorrow as they think they may have to take me back up to 50.

Overall I think I am improving. I managed to walk for an hour yesterday. No

problem at all. Needed my usual siesta after lunch and then had another walk.

I am sleeping well get up early, usually about 6.30am. That’s my normal time. Off to bed at 10.30pm.

Thank you so much for your kind and prompt replyx

[DorsetLady PMRGCAuk volunteer in reply to Clarinet1234]

Would have said you weren’t on original dose long enough to get GCA under control -so they were a bit premature in jumping to infection theory.

Would also say you probably need longer on 40mg -and maybe slightly higher -you need to be on starting dose long enough for Pred to get a grip. It working on 2fronts-fighting built up inflaming and also dealing with new daily inflammation. Patience from doctors is required…doesn’t happen overnight. Much as they would like it to.

Do let us know how you get on.,

[Clarinet1234 in reply to DorsetLady]

Will do. Thank you

[Clarinet1234 in reply to DorsetLady]

CRP has come down from 50 to 39. ESR I think was 59 which is an improvement. They have increased steroids to 50mg for the next two weeks and then will review.

Feeling more positive as things seem to be slowly moving in the right direction.

Thank you for your support.

[PMRpro Ambassador in reply to Clarinet1234]

That's better ...

[DorsetLady PMRGCAuk volunteer in reply to Clarinet1234]

Good news…

[PMRpro Ambassador in reply to Clarinet1234]

60mg is the recommended starting dose for complex GCA and you need it a LOT longer than 2 days before dropping the dose. What symptoms had you had? But that CRP was so high, 60mg was a reasonable start - but 2 WEEKS would have been more suitable. They are always in such a hurry these days!!

[Clarinet1234 in reply to PMRpro]

Symtoms , leg, arm, shoulder , scalp, puffiness over both temples.

Visit to hospital was triggered by eye symptoms.

Eye casualty ruled out GCA said it was a posterior vitreous detachment.

They were concerned as my blood markers were so high and sent me to main A/E. They said that they needed to cover me for GCA just in case . Hence the 60mg of press.

[PMRpro Ambassador in reply to Clarinet1234]

If you had visual symptoms, 60mg was the right starting dose - but you needed it for longer. Do hope it all goes well and they manage to work out the right answer in the end!! But with 60mg pred you should be OK - even if it doesn't feel like it at the moment!!

[Obscureclouds]

After PET scan diagnosis I was put on 60mg Pred for two weeks and had anticipated an immediate improvement but instead continued to get worse over first week. Not able to walk more than a few yards because of fatigue, CRP rose and platelet count in mid 600s GP repeated bloods then rang to say concerned Platelet count was galloping towards 700. She was unable to get any response from Rheumatology ( Friday afternoon) so arranged further bloods and monitoring over the weekend through 111 out of hours service. Monday blood markers were thankfully falling. Tuesday still too tired to walk. Woke up Wednesday jumped out of bed feeling great. Husband suggested a drive out and what I intended to be a short walk ended up about 2 miles. Within a week I was back to 4 Aqua fit classes a week and could walk 4-5 miles without fatigue (couldn’t stop talking though) normal platelet count and CRP 7. I was on 50 mg for 3 weeks before dropping to 40. I guess we all respond differently but it doesn’t sound like you were given long enough on the high dose you probably needed. Hopefully things will soon settle down for you.

[Clarinet1234 in reply to Obscureclouds]

Thank you that is reassuring

[PMRpro Ambassador in reply to Obscureclouds]

They have now added platelets to possible markers for GCA - so possibly yours rose along with worsening GCA activity.