catch up after private rheumatologist appointment

[annie_marie]

It's been an interesting few weeks since I last posted.

To recap, I was diagnosed with pmr several years ago, gca a year ago. On the advice of the doctor, I was trying to reduce the steroids down from 60mg after another gca flare up (taken for three weeks. My normal dose being 15mg prior to flare up. ) and basically I came down too fast, then with the advice from this forum started to reduce more slowly. Was still in considerable pain, but able to cope. Thank you.

I went to see Prof. Dasgupta who quickly diagnosed that along with the pmr & gca I had now developed steroid myopathy. Great ! At least I now know that the extra weight wasn't all my fault. Anyway, I need to reduce the prednisolone because my muscle is being replaced by fat, and fat wont hold me up! Knowing just how much pain and immobility I have without the steroid, Prof. D has prescribed a pain block drug which I haven't had through yet. At present I have to walk with a stick and unable to get up stairs or walk any distance so I am quite concerned how I will manage. But as with everything else I will cross that bridge as & when I need to.

In the meantime I saw my retinal consultant who urgently wants a temporal biopsy. I am not keen because I have had a brain haemorrhage and have hydrocephalus and any trauma to my head sets me back neurologically which I do not need at the moment.

So, I went back to Prof. Dasgupta yesterday and had a temporal artery ultra sound scan, which shows NO giant cell arteritis! Phew, am I glad I went to see him again.

But now I have a mystery, can anyone throw any light on why, for over a year everyone has told me it was GCA and why it responded immediately to being hit with 60 mg prednisolone? my sight came back within half an hour. If it wasn't giant cell arteritis what on earth is mimicking it?

Anyway, as always, thanks for all the helpful and constructive advice this site is invaluable.

[Determineddebbie]

When I had my scan on temporal artery after 2 weeks of pendisalone the consultant said the steroids may have settled it and a no show if gca wasn't conclusive . I see my rhummy for 1st appt Thursday . I won't be electing for biopsy after all this time ( over a month ) on 40 mg steroids no point . It's useful on here r to get all tapering stories but I will have to accept the thymus 1st taper without question ... Not looking forward to consultation so recap ... No show is not necessarily that no gca was there in 1st place ... Relapse on tapering will be an indicator . Hope this helps

[annie_marie in reply to Determineddebbie]

Thank you determineddebbbie. Very helpful. A

[Celtic PMRGCAuk volunteer]

annie_marie, as Debbie has already indicated, your original diagnosis of GCA was appears to have been sound, having been confirmed by the fast response to the high dose steroids, but it is unlikely that the large cells they are looking for during ultrasound and biopsy would be found at this stage due to the length of time you have been on high dose steroids.

[PMRpro Ambassador]

As far as I know, when you have been on high dose pred the inflammatory signs fade fairly quickly. If your GCA is currently in remission there will be no sign of it now. The whole point of the pred is to reduce the swelling caused by the giant cells until the autoimmune cause goes into remission. Although there is work that suggests there is still evidence of inflammation in GCA after 6 months at high dose pred (over 20mg), another 6 months is more than likely enough to get to remission for many people. Everyone is different.

I am wondering though if we have read what you say correctly with regard to the timeline? Did you have GCA a year ago, reduce relatively fast and have a flare some time ago when you were back on 60mg for 3 weeks or have you have been back on high dose pred for the last 3 weeks? Is that what you are saying?

Is there any chance you could have had a TIA (mini-stroke) that wasn't picked up?

I developed steroid myopathy when I was taking Medrol (methyl prednisolone) - which reversed very quickly as soon as I switched to another corticosteroid. I have no such problem with either prednisolone which was I started on for PMR in the UK or prednisone which I am on now. Medrol is the usual corticosteroid here where I live in Italy and that's the only reason I was put on it when I moved, there was no real choice at the time. Is it maybe worth asking Dasgupta if a different steroid might be worth trying?

[annie_marie]

thank you PMR pro, Yes, I was diagnosed with GCA over a year ago, (PMR about three years ago, but I am convinced I had it many years before) and yes I did have two flare ups in the last six months. both times with the same treatment only this last time (about eight weeks ago) reducing from the 60mg more slowly after a bad episode the time before. I should start writing down everything which is going on, because with the brain fog and sheer exhaustion I too get confused what order things happen.!!

With regards to the possibly it was a TIA, yes the on call GP thought it was at first then ruled it out.

Thank you, I will ask if there is a different steroid I could try.

[PMRpro Ambassador in reply to annie_marie]

The idea of keeping a diary is a really good one - not least because you can look back and see what happened in a previous similar situation. No-one can remember correctly after a few weeks, never mind months - so having it written down together with dose and actions taken is always helpful. With a diary too it is possible to then write a brief summary before a hospital/GP appointment to hand to the doctor rather than um and er when they ask questions.

[Determineddebbie in reply to PMRpro]

I did that !!! So glad I recorded it all . I would like to know if I could choose to go elsewhere for a 2 nd opinion as she is going to her boss dr Johnstone who is obviously going to support her .

[Determineddebbie in reply to annie_marie]

Did you flare up as you came off steroids ? ... I'm in agony tonight in my neck hiot and inflamed after only 5 mg - 40 mg taper I'm dreading it going down to 20mg in 4 weeks

[Doralouise77]

I just had an MRI (after 10 months high dose Pred for GCA) and was told this "your MRI is absolutely normal, you do not have GCA, reduce the Pred from 15 to 10".....I had already been told to go from 20 to 15 last week.....makes you wonder......I've been through such nonsense since the beginning so I guess I can tolerate a bit more......I did some research on the validity of an MRI after being on steroids....in one case one large dose had caused a proven GCA to result in a negative MRI....the usual length of time for it to become negative is about 2 weeks....we used to have a show called Candid Camera and I feel I'm definitely on it....

Cheers

[Determineddebbie in reply to Doralouise77]

I'm having an mri on my hips in a couple of months and am tapering steroids from 40 to at least 20 but I too am worried that it will affect the results . I got told I did have gca then I haven't . I too am frustrated wish you well

[Doralouise77 in reply to Determineddebbie]

If it's an MRI on your hips I don't think Pred will affect the results, depends what they're looking for I guess, mine showed a large gluteal tear on Pred 30. If you don't mind, how did you get diagnosed and then undiagnosed please?

Cheers

[Determineddebbie in reply to Doralouise77]

Originally diagnosed by dr after 2 years of saying it was fibromyalgia . When I was just at my wits end with pain he asked for blood tests and esr was raised . I responded to 30 mg prendisalone over 5 days . After that I was rushed in with suspected gca and put on 40 mg prendisalone and scanned ta 3 weeks later .. Negative Then the wonderful rhumatigist based purely on my age 54 yrs undiagnosed me and is looking at sero negative type ??? I don't think my gp is happy he says I've been messed about

[PMRpro Ambassador in reply to Determineddebbie]

DD: did she say WHY she was ordering the MRI? If it is to look for inflammation she's unlikely to find any in a couple of months time but maybe she wants to looks for signs of joint damage due to RA or the like.

[Determineddebbie in reply to PMRpro]

She thinks I may have the sero negative type and I already have next to no flexibility in my hips so looking at the joint , muscles and sinews ??? . I know I'm in a lot of pain coming down off steroids atm .

[PMRpro Ambassador in reply to Doralouise77]

Animi: Of course your MRI didn't show inflammation - even low doses will make a difference to the validity of the readings. Honestly - where do they get their ideas!

[Doralouise77 in reply to PMRpro]

I am so disillusioned and disappointed with this new 'specialist' and I use the term loosely. This is a fellow who is a professor at the uni for teaching rheumys and who always has at least several experimental trials going. The only thing I can think of is he's looking for a positivte GCA for his experiments....he did say at my first (and only) visit that you needed a positive biopsy or MRI to be included in his research....shaking my head....even I knew it would be negative....

Cheers

[PMRpro Ambassador in reply to Doralouise77]

That's an international criterion for these trial - you have to know it was DEFINITELY GCA - or it can be alleged it wasn't really GCA. Hope springs eternal...

[Determineddebbie in reply to PMRpro]

I know !!! I could scream with frustration and as for gca why the hell they didn't scan when I got to the hospital with pain when on only 30 mg ?

[Doralouise77 in reply to Determineddebbie]

Exactly Determineddebbie, I was diagnosed with GCA by an excellent rheumy who had diagnosed and been looking after my PMR....went on high dose, tried to taper but couldn't get under 20...lost my first rheumy and ended up with this one who says I don't have it based soley on the negative MRI...this was a special one I was told and not available very many places...in my case it looked at the temporal artery on the side I was having symptoms on, supposedly something the regular cranial MRI didn't do.

Cheers

[Determineddebbie in reply to Doralouise77]

The Mri I'm having is on my hips .. Looking for sero negative type arthritis ... She's dismissed my poly and gca ... Quick cure !!!!