PMR/HCA

[deadeye]

Hello..I wrote a lengthy post...but I don't know where it went? deadeye

[PMRandRA]

hello deadeye

if you click on your monika ( deadeye) you can see how many posts you have made. It says there is 1 which says " hello I am deadeye"!

rotten luck, looks as if you will need to do )the long one again.

[deadeye in reply to PMRandRA]

Oh boy! To make a long saga short..this is my second bout with this "crud" in 5yrs. Reading other posts sound very familiar..I get a blood test back tomorrow..I started prednisone at 40mg..for 2 wks..then 20mg. for 10days..15mg. for 10days..12 and 1/2 for 5 days and all my symptoms are back..so I can't wait to see what he comes up with next..

[DorsetLady PMRGCAuk volunteer in reply to deadeye]

Whatever he comes up with... very obvious too fast a reduction! Timewise and dosage I would suggest.

Get back to a sensible dose, get stable and then reduce a bit more moderately, giving yourself time between each reduction to know your symptoms are controlled, before you cut dose. 10 days is hardly long enough, let alone 5 days. It can take anything up to a fortnight for a flare to really appear, so if you reduce under that time you're never 100% sure everything's okay.

Good luck.

[deadeye in reply to DorsetLady]

I agree totally! Here is an update..I am now on 15 mg. of prednisone..my blood test last week..my numbers have climbed again..he wants me to have a second surgery for GCA..has anyone heard of this? Thursday I am talking to a vascular surgeon about my situation..the girl that was calling from the surgeon's office to make my appt. was ready to schedule the surgery..I said..hold on a minute..I'm not having my head cut open again when I still don't have a diagnosis! What do I do now?

[DorsetLady PMRGCAuk volunteer in reply to deadeye]

Hi deadeye,

if you're already on Pred , very little point in having a biopsy, let alone another one!

It will probably come back as negative, but that doesn't actually mean you don't have GCA, might just mean the sample they took shows no sign, doesn't mean you don't have in other arteries, or even in another part of the temporal artery! If the Pred has done its work they shouldn't find enlarged cells, so really a waste of everyone time.

So really it's your symptoms that should be helping the diagnosis.

[deadeye in reply to DorsetLady]

I hope I can get answers from the vascular Dr. The rheumy gives me prednisone but not even a diagnosis for PMR.

[DorsetLady PMRGCAuk volunteer in reply to deadeye]

So has he actually said what he thinks it is?

[deadeye in reply to DorsetLady]

No..that's why he wants me to have another biopsy...I think he has blinders on.

[PMRpro Ambassador in reply to deadeye]

And really doesn't know a lot about GCA I'd say if he expects a second biopsy to give a result after being on pred for some time at whatever the dose.

If your markers are increasing at 15mg - it probably means you need a slightly higher dose. If he continued as it being GCA to start with - what has changed now?

[deadeye in reply to PMRpro]

Since my pressure headache came back at 12 and 1/2 mg. he put me back at 15 mg...but he doesn't want me taking it long term without knowing for sure..so he wants another biopsy. I think it would be neg. at this point too..I'm going to say no..but I still want to talk to this vascular Dr...he must know more than this one.

[PMRpro Ambassador in reply to deadeye]

The reduction is wrong - it may be how you manage other things. It is NOT how you manage PMR.

40mg is very high to start for PMR, that is a GCA dose. 20mg is more usual - and you stay there for 4 to 6 weeks and only then do you start to reduce. Some people can manage 2.5mg at a time down to 10mg, others can't. But you stay at each for at least 3 or 4 weeks to be sure it is still enough. Others find 1mg at a time from 15mg is better.

This is a link to the "reading list" on another PMRGCA forum:

patient.info/forums/discuss...

Have a look at the "Bristol paper" - it was written by rheumies for GPs. Your doctor might be prepared to listen - it is a good start but the steps may be a bit big for some people.

[deadeye in reply to PMRpro]

Thankyou for that information..I downloaded it for reference..but I'm through with that rheumatologist.

[SnazzyD]

How fristrating! I have found that if I'm mid way through a post and I navigate onto a different page, even on the same site, the post vanishes never to be seen again.

[deadeye in reply to SnazzyD]

That's what I did!😬

[PMRandRA in reply to SnazzyD]

Yes indeed! I discovered that to my frustration as well!

as my mum used to say, finish what you start. 😲

looking forward to reading your new post. 👍😜

[deadeye in reply to PMRandRA]

P.S. At the top my heading is PMR/HCA😰😨😬...it's supposed to be PMR/GCA😃

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Been there.... sometimes it does warn you. But I find it all too easy to just touch the page somewhere especially on the iPad and wumf it's gone!

Grrr!

[deadeye in reply to DorsetLady]

I have a kindle fire🏡

[PMRpro Ambassador in reply to SnazzyD]

Open the post you are replying to in another tab - use one to write and one to navigate.

[GCA1947]

GCA sufferer-To all who have suffered from the disappearing posts try typing in Word or something similar first and then import into the post box when its finished. You can even check your spelling something which I find very frustrating that I can't do in email, and continually save your efforts. Then when you're completely satisfied with the appearance and layout and do the import you won't find you're lost hours of work and have to start again.

Leg skin holes caused by Staph Aureus and are much better; elastic stockings fitted yesterday are easier to get on as I found this morning and Prednisolone comes down to 4.0mg today.

Varicose veins are back and need surgery and there's a blockage in the calf of the left leg.

Best wishes to all and bye for now

Colin

[DorsetLady PMRGCAuk volunteer in reply to GCA1947]

Colin,

That's what I do if it's going to be a long reply, or initial post.

[GCA1947 in reply to DorsetLady]

Dear DorsetLady

I thought you probably did that with your notes for new patients/sufferers. I couldn't believe that you typed it all out each time. It doesn't matter that it's on the long side its packed with useful information and I'm so pleased I printed it off.

Best wishes

Colin

[DorsetLady PMRGCAuk volunteer in reply to GCA1947]

No, I keep that in my Notes folder on iPad. Then I can update it as and when.

Glad it's proved helpful.

[PMRandRA]

to change your name heading click on profile, go to help and you will find change my name.

[Jackoh]

Has happened to me too in the past- so frustrating! Xx

[PMRpro Ambassador]

If you are working on a computer - open the post you are replying to in another tab - use one to write and one to navigate.