A couple of GCA Niggles

[allykat]

I haven't said much on here but do try to keep up to date with other posts. By way of background, I was diagnosed with GCA in early April 2015 and because I had jaw issues, was started on 50 mg of prednisolone. I also take alendronic acid, low dose asprin, lansoprazole and adcal. I am now down to 7 mg prednisolone and thus far have had no flares, nor have I developed a moon face. I have only put back on the 7 pounds which I lost when I first became ill. I consider myself so very lucky to have coped so well so far. Now here is the "however". I am losing a lot of hair and there isn't much growing back. I have also noticed that since August, my voice has become very raspy and sometimes cuts out on me. The strange thing is that when I sing, I am able to sing above the raspiness and can produce a pretty decent sound. My question is does any of this sound familiar to anyone out there? These seem to be fairly insignificant complaints and I can live with them. I suppose I am looking for reassurance that it is all part of the treatment and will right itself in time.

[PMRpro Ambassador]

That is an amazingly fast reduction - lucky you!

The hair is possibly related to being ill in April - hair loss is common after being ill but it often takes 5 or 6 months to be noticeable. If it is that it will grow back in time - be patient. However - it is also a rare side effect of lansoprazole. What about asking your GP if you could use ranitidine instead - and older antacid medication but with fewer side effects and just as good. Many people don't use a PPI for "stomach protection" because of the side effects and have got away with using yoghurt to protect their stomach.

When I first had PMR I had the same sort of voice problems and although for a long time I could get above the "rasp" to sing eventually I couldn't guarantee the right note coming out. I also had awful breath control problems. I (and one rheumy) suspect it was due to GCA in thoracic arteries - that can cause a few such GCA symptoms that I also had but really mine was typical PMR and responded perfectly to 15mg pred. I'd had jaw claudication too though and for 3 weeks the sore scalp which then went away - of course then I didn't know what I know now! I wonder if you also have GCA in thoracic arteries and that is still there now you are at such a low dose? There is research showing there is evidence of GCA still being there after 6 months on high dose pred - that's above 20mg which you are now well below after just 7 months.

[DorsetLady PMRGCAuk volunteer]

Hi,

Would agree with PMRPro re hair loss being associated with illness, any illness. It seems to take about six months to become really noticeable, even if you have recovered. Anecdotal evidence from my mother who was hairdresser.

I noticed my hair was getting very thin and unhealthy looking before I started Pred - undiagnosed for 18 months - but actually once I'd been on Pred for about a year it improved immensely, and now is good as pre GCA days.

It is a bit worrying, but you can do miracles with scarves and accessories.

Can't help with the voice - sorry, never could sing!