Gca possibly starting again

[heli13]

Hi everyone, I've had PMR and GCA for 4 years, got down from 60mg to 5mg. Then last week got chest infection, it knocked me for six! two days ago i got severe pain in head going up from shoulders to head but also across top of head and both temples. I've just had blood tests yesterday and seeing Rheumatologist today, but I'm very worried that GCA could be starting again and how would I cope going through all that again?! Today my right temple is a bit tender, but I've had that on and off for 4 years. Should i insist on a Pet Scan now, as a biopsy at this stage would probably be negative? I don't want to go on 60mg steroids unless they can be sure it is GCA. Has anyone else had GCA go on this long?

Sorry there are lots of questions, many thanks

Helen xx

[olive2709]

Morning Helen ,only had my GCA 18 month's but pain you describe sounds !!!!. I got pred free 12 weeks ago patted myself on back 4weeks later pain started to return waited 2 more weeks then put myself on 10mg a day saw GP after 5days told her what I had done and that symptoms had started to go . She agreed with me and gave me 8weeks @ 10mg with me making reductions on my own timetable after that . So what Iam saying is you might have to go up a little don't despair catching this early could get this flair under control you will be OK

[heli13 in reply to olive2709]

Thanks for replying. Im seeing rheumatologist this afternoon and dr just rang with ESR blood test, very high at 103. x

[Celtic PMRGCAuk volunteer in reply to heli13]

heli, although that is a high ESR and much of it could be due to the chest infection, you are wise not to ignore the head pain. But if you have been coughing a lot due to the chest infection that could also be contributing to the head pain. It is a particularly nasty virus going around at present - the coughing itself has left me with severe stomach and back pain where I've strained muscles. I would have suggested you increase the steroids back up to 10mg immediately to see if that made a difference and get your eyes checked by an ophthalmologist but as you are seeing the rheumatologist today, hopefully s/he will be able to come up with the answer.

[Pipistrelle in reply to olive2709]

Hi -- I am just a little concerned by what you describe, as it would be very unusual, and potentially put you at significant risk of a return of GCA, to only take prednisalone for 18 months for this very serious condition. This is well under the standard treatment for PMR (2 years) and GCA is generally more serious and takes longer to reduce from because patients start at a far higher dosage. Studies show that too-fast reductions create a significant risk of a return/serious flare, which it seems you've already had and only a small dose of preds is probably not the way to manage it without risk of further flares. Maybe I misunderstood, but if you've done reductions in only 18 months from a GCS level of preds, and are only under the care of a GP, I think it would be a very good idea for your GP to read the standardised treatment document for GCA/PMR issued by the national rheumatology bodies in both UK and US and ask for guidance form a rheumatologist (if not refer you to a neurologist)? If pain returned so quickly for GCA I would think you are possibly placing yourself in a situation where further returns are likely to require you to go through several years more of prednisalone (as going through flares tend to mean it takes longer for the condition to go into true remission). I know that's not what you want to hear but it would be extraordinary for anyone with 'only' PMR to get through reductions from a start of only 12 or 15mg preds in just 18 months.

[heli13 in reply to Pipistrelle]

This message is for Olive 2709? Hope she reads it x

[Pipistrelle in reply to heli13]

Yes, a reply to her comment, under your original post. Maybe I misunderstood the post, but seems a worryingly brief amount of time to be on preds for GCA.

I hope your own concerns turn out to be OK and due to your recent illness, rather than a return to GCA. Let us know what the doctors say!

[PMRpro Ambassador in reply to Pipistrelle]

Depends - I know 2 people who had GCA and were off pred in under 2 years. It would have probably been less but the doctors messed them about to start with.

It seems that sometimes GCA happens, the giant cells form because of a limited autoimmune disorder and once the inflammation is reduced that is it and you can reduce the pred to zero. PMR often is an ongoing autoimmune problem so the inflammation returns every morning. The Mayo speaks of a "cure" in GCA, not with PMR. And to be honest - unless the giant cells have been seen it could be another vasculitis that produces similar symptoms.

[olive2709 in reply to Pipistrelle]

I know it seen fast ,couple of facts, I was diagnosed on one call to out of hours service on a Saturday from call to treatment was less then 4hours no vision disturbance put on 40mg had full battery of tests ,this flair is down to me .

Had to go on thyroxin when down to approximately 4mg carried on with reduction should have stopped started to go of the boil about 2mg brushed it away . Thyroid stable ,bloods every 4/6 weeks bone scan in November showed OP . ON PLUS side just had 4weeks of fealing great ,

Thanks for your concern Olive

[PMRpro Ambassador]

There isn't any artery left to do a biopsy if you had one done originally!

It shouldn't get as bad as originally if it is caught quickly and you may not be put back on such a high dose. As Celtic says, the ESR could just as well be the chest infection but it is VERY high.

Good luck and let's hope it isn't our friend back.

[bowler]

I was diagnosed with GCA/PMR aged 54 I'm now 71 and still have flares of it, I have never been off Pred. I have found over the years that, flu jabs set it off, [ but not every one ] urine infections, chest infections, stress,

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I was diagnosed over 8 years ago with both GCA & PMR reduced steroids over that time, now on just 5 mg daily. - they have caused me many problems as they really do not,suite me. I now have Diabetes 11 (from th way steroids act on certain organs with me) I began to lose even more of my appitite, with weight going down- not up as one would expect with steroids, & even tho I've never been able to eat meat, fish or fowl or eggs (unless in the odd cake) (I don't produce an amino acid that helps move fat from the body) Ive now got a fatty liver from th reaction to steroids, which prevented me from going on the MT (cancer drug to treat the immune system) A locum GP wants me off the steroids- ( do too) but, there's no alternative I can think off after ruling out this other drug. When first diagnosed my sight was reduced by over 5 prescriptions in less than a year, so my concern is, without something else to replace the steroids reducing the inflammation will my sight diminish further with a risk of a,stroke?