GCA Tapering Prednisolone too steeply, the next chapter

[Dontwannabesick]

Hi all and firstly thank you for all the good advice and support I received in response to my previous post.

To recap on 03/09/18 Had been advised by Rheumatologist to cut from 65mg to 30mg. By 10/09/18 I had head pains and was feeling really shaky so I phoned help line and was advised to go for blood test. 12/10/18 Phoned for blood test results CRP was raised as was ESR. Advised to go up to 40mg.

17/10/18 Feeling worse and GCA symptoms are definitely returning. Tender scalp, headache, jaw claudication, also the blood vessels in forearms very enlarged and I have a sensation that something is gently gripping my wrist. Blood results show ESR within normal ranges but CRP still raised.

21/09/18 Feeling really ill on 40 mg, rang rheumatology, as advised by Family Doctor, but no one rang me back. Headache returned as has claudication of jaw. My head felt really hot and as if it was about to explode. Returned to 65mg of prednisolone on own volition. Also consulted this forum and received so much good advice, so once again, thank you.

Now the next chapter, which I think is real progress.

Today I saw rheumatology, told them how traumatic drastic taper had been. Told them I put myself back on 65mg and have stayed on since Friday , ie for last 10 days. Symptoms subsiding again. Still slight claudication in jaw, but stiffness rather than actual pain.

Now been prescribed Methotrexate 10mg on a weekly basis for next 4 weeks, then if I am OK on this it will increase to 15mg weekly. 3 days after each Methotrexate dose take folic acid tablet.

Advised to taper prednisolone by 5mg each week, but if that produces a reaction return up to previous dose then try taper 5mg again at 10 day intervals. My GP has already put me on a repeat prescription which I can re-order on-line so I'm in control there.

Had a chest X-ray today, and arranged for blood tests every 2 weeks starting in two weeks time.

To see rheumatologist in 8 weeks.

Bone scan arranged for 13/10/18 and waiting appointment for Zoledronic Acid infusion to protect my bones.

Fingers crossed !

[DorsetLady PMRGCAuk volunteer]

Hi.

What a pity he wasn’t as caring and considerate the first time around, but at least you’re on the right track now.

[Dontwannabesick in reply to DorsetLady]

Thanks to the help and support from you guys x

[PMRpro Ambassador]

I wasn't aware that mtx will allow such an extreme taper, even when introduced so early. Don't be afraid to tell them if you have side effects from the mtx though.

Good luck.

[Dontwannabesick in reply to PMRpro]

I will!! The x

[Dontwannabesick in reply to Dontwannabesick]

That was meant to say thanx

[SheffieldJane]

Well done for taking charge! Have you had a bone density scan that indicates a real need for Zoledronic Acid? These heavy meds are not to be trifled with. As PMRPro says Methotrexate does not help everyone, so be alert, which I think you are. Good luck.

[Dontwannabesick in reply to SheffieldJane]

Bone density scan a week on Saturday no date for Zelondronic acid as yet. I'll keep my eye on the ball, at least they now seem to be giving me a voice x

[SheffieldJane in reply to Dontwannabesick]

I think you have found your own voice and they are having to listen.

[prunus]

I can only go by how I was treated and your treatment is in stark contrast to mine. With me the emphasis was to be very gradual and patient - not this sudden up and down. It originally took two full years to achieve but i was warned at the beginning. I think it is good for you to listen to your own body and be guided by how you are feeling. Don't be frightened - take control. There are guidelines for coming down.

[Dontwannabesick in reply to prunus]

Thanks, I think I got through to them and I'm determined to do what my body dictates now.

[Annodomini]

Thanks for asking me for advice. It's now some time since I was able to come off pred. I was never on such a high dose as you have been but having said that, the reduction you were told to make was unusually big. 10% is usually the recommended reduction on this forum as far as I remember. If you can tolerate that, continue in small steps until you reach a point where you can't tolerate it and stay there for a bit.

I am interested to see that you are to be started on methotrexate as my rheumy is thinking of putting me on it for a different auto immune condition and related joint pains. I am very reluctant even to try it and am going to discuss it with my sensible and experienced GP.

Good luck with all these measures you have to take to achieve a level at which you can live comfortably.

Anno

[Dontwannabesick in reply to Annodomini]

Thank you. I had my first dose of methotrexate today. So far so good and fingers crossed. I'm thinking to wait maybe a week or two before starting a slow taper as I still have some slight jaw pain and stiffness when chewing.

[Francien]

I've had Methotrexate (15 mg) from early on. (Diagnosed with GCA end of december 2017) I'm now on my 33th week of MTX and doing reasonable well. Of course there are side effects, but it's doable - for me. It did help me taper the pred more quickly from 60 in december to 10 mg now. By the way, it takes 6 to 8 weeks before the MTX works. You shouldn't taper too much in the meantime.

I also had the Zoledronic Acid infusion. (Didn't have a bone density scan) After that it felt like I had a very bad flue for a week. Woudn't do that again without a bone density scan... But you get one, so that's ok.

As Prunus said; listen to your own body. And learn as much as you can from this wonderful forum, it's such a great help!

xxx

[Dontwannabesick in reply to Francien]

Thank you Francien. I am going to take the taper very slowly, I don't want another train wreck head like I had the other week. It's good to hear from someone who's treading and has trodden the same track as me.