Warming up for Rheumy visit

[krillemy]

So I was flying on 10 mg in November, and at 55 years old and ill since 2018 I thought I was finally in remission - really I believed I was 100% will again, juuuust needed to get out of prednisolon. In January I dropped down to 7,5 mg (we might as well see, the new Rhemy said). He was not too sure - as I was.

It went so well - until it didn't... So the past 3-4 weeks, symptoms crepes in on me, including jaw pain when I eat. I have been SO angry. But at least my Dexa scan and Cholesterol are OK, the latter being a bit high, but so is my HDL- very high (the good cholesterol), so I guess that can even it out?

I tryed to take 10 mg during the weekend, and what a relief.

My plan is to ask the rheumy for an Ultrasound of the neck/jaw to check for GCA (I was never diagnosed/checked before) and then suggest to go back on 10 mg and slowly start tapering again after 2 weeks - maybe dead slow this time, as I do tolerate prednisolone quite well.

What do you think?

[DorsetLady PMRGCAuk volunteer]

Does sound suspiciously GCA like especially as the extra Pred helped.

But perhaps you should also look at this link in case it’s TMD/TMJ -

mayoclinic.org/diseases-con...

[PMRpro Ambassador]

However you look at it - there is only one way to see if it is in remission and that is to taper very slowly to zero. You can say it is gone when you can get to zero pred for 6+ months without a return of symptoms, There is NO WAY that you can even suspect that if you are still at 10mg pred since even 1mg is plenty to hold low level activity disease at bay so the inflammation doesn't build up again. Never forget the dripping tap analogy.

I doubt an ultrasound will show presence of GCA to a degree of certainty that would say you could stop pred. If you were on zero pred and had a PET-CT it might but any pred interferes with that.

[krillemy in reply to PMRpro]

Well, I am not in remission thats for sure.... and I did forget about bout the dripping tap and the fact that inflammation will not show while still on prednisolon! So I guess it will be back to the slow taper - thanks for reminding me

[Viveka]

Sorry for the let down. It's a beast when we get our hopes up, but you caught it well and have a plan. Have a look at the FAQs if you havent already about jaw pain. It is relatively distinctive if GCA, and there is also the chewing gum test which will be in FAQs. X

[krillemy in reply to Viveka]

Thanks! I cant find any chewing gum test though?

[PMRpro Ambassador in reply to krillemy]

Chew gum at the rate of one chew per second for 2 to 3 minutes. That should be enough to elicit jaw claudication pain which then resolves when you stop.

It was developed and tested by a group in Australia as a simple screening test

sydney.edu.au/news-opinion/...

nejm.org/doi/10.1056/NEJMc1...

[krillemy in reply to PMRpro]

Thanks!

[villalatina]

I've just come off Prednisolone having tapered down to 2mg and then stopping. The steroids have caused an inflammation to the lining of my stomach and I've been experiencing constant heartburn. My rheumatologist wants me to take Hydroxychloroquine and one of the most common side effects is nausea and/or indigestion!! I don't have PMR but Vasculitis affecting my joints. I'm beginning to think I'll take nothing and see what happens 🤔.

[DorsetLady PMRGCAuk volunteer in reply to villalatina]

I'm beginning to think I'll take nothing and see what happens 

Might not be very good for your adrenals -have you had your cortisol levels checked. The last thing you need is an adrenal crisis.

Do you take a PPI to protect stomach against the effect of steroid -whichever form you take ?

[villalatina in reply to DorsetLady]

I take Omeprazole and Gaviscon. I have other digestive problems including mal absorption of bile salts and take Colestyramine - an oral suspension. I had blood tests last week and the results are OK at the moment!!

[DorsetLady PMRGCAuk volunteer in reply to villalatina]

Good, but just be aware of adrenal insufficiency symptoms…..

[villalatina in reply to DorsetLady]

Thank you. Will certainly look into it.

[DorsetLady PMRGCAuk volunteer in reply to villalatina]

This link contains basic info….

healthunlocked.com/pmrgcauk...

[AshPen9 in reply to villalatina]

I take Hydroxychloroquine plus Prednisolone (for Spondyloarthropathy). Have had no nausea or indigestion from the Hydroxychloroquine. Why not ask for gastro resistant Prednisolone?

[Bignorhill]

No point me adding to the slow tapering in your case. I certainly did not spend a lot of time tapering to get off Prednisolone but then got put onto Methotrexate for Vasculitis. After a year I stopped the drugs due to the lack of proper screening to see if they were affecting my liver, the doctor was not ordering the correct blood test which I had to point out to them.

9 months late, have just seen the Rheumy and as expected they have said I am fine, probably due to the fact that I am not taking their drugs. Nothing done to check whether I still have Vasculitis or not.

The PMR seems to have stayed away at the moment,