Judywalks

[Judywalks]

it has been so helpful to read all the posts. I have only recently discovered this site. I started with PMR a few years ago and was put on Pred by my GP. 2yrs later I was diagnosed with GCA and went up to a higher dose. All of which helped with inflammation etc but I had the usual side affects. I was also referred to rheumatologist who also prescribed Methatrexate. I gradually tapered until 2019 and then Rheumatologist. said to stop taking everything. It was fine at first but after 6 months I had a flare of GCA and was up to 40 mgs of Pred plus Methotrexate again. The side affects were much worse . I was so tired all the time had headaches and I had two car accidents as a result. Very scary! My face was also like a balloon and everyone just thought I was putting on weight. It’s so difficult to explain about this disease and the affect it has as in my experience it is not generally understood.

I have been tapering and in January the Rheumatologist asked me to stop taking Pred and said she will also gradually reduce Methatrexate. I am very anxious now and fearful of having another flare. I have also had two knee replacements and a shoulder replacement and am waiting for Carpal tunnel op. I am 80 now and feel as though another flare would be too much . As I read this it all sounds a bit melodramatic !! However it’s good to be able to share with others who understand. I know it’s not good to be on these medications for so long but I feel a small dose to try and alleviate another flare is better than maybe having to go back on to high doses again. I’m also experiencing withdrawal feeling very tired , achy, lightheaded and brain fogged!

Thank you to those who read this and I would welcome any comments particularly from those who also suffer with GCA.

[Koalajane]

hi and welcome. There are many with more knowledge than me who will be on soon. I was wondering what dose you are on that your rheumatologist wants you to stop taking. I can’t see that a small dose would be any harm.

Best of luck

[SnazzyD]

oh my goodness, you poor thing; what a lot of messing you about. How long has it been since you we put back up to 40mg? What dose are you on now? What country are you in? The Rheumatologist should know you can’t just stop Pred like you can Methotrexate because of the risk of adrenal insufficiency.

[Judywalks in reply to SnazzyD]

I was put back up to 40mg in 2019 . I have tapered down to 1mg every other day over a long period of time and stopped in January. I am in UK.

[PMRpro Ambassador in reply to Judywalks]

OK, fair enough. But with your history - and if you were fine at a low dose, I'd think that little talisman was worth it!

[PMRpro Ambassador]

At what dose of pred are you now? At what dose does she tell you to stop pred - is it sudden or does she let you taper off slowly? Seems a very strange approach in anyone if they aren't sure the adrenal function is OK.

Prof Baskhar Dasgupta, ret, from Southend, UK told us a couple of years ago that he often keeps patients at 2-3mg long term as he finds it reduces the risk of relapses and feels MTX doesn't really help a lot in GCA. Since he is the foundation of much of the GCA knowledge in the UK I'd trust his feelings.

[DorsetLady PMRGCAuk volunteer]

In reply to your previous post I attached a link on adrenals… and I’m going to send it again, as it sounds as if that’s what your problem still is -

healthunlocked.com/pmrgcauk...

I would suggest you request a basal cortisol test as described in the link [can be done in GP surgery] to see what state your adrenals are in, and you may well do need to be on a very small dose of Pred for both the adrenals and your GCA.

[123-go]

Judywalks, you are in no way being melodramatic! Frankly, I’m not at all convinced that your rheumatologist has a good grasp of PMR/GCA!

I have PMR/GCA/LVV (Large Vessel Vasculitis-asymptomatic) and taking very low dose Prednisolone and 10mg Leflunomide daily. Last year I was told by a rheumatologist that my PMR had ‘gone’ and that I was to stop taking the Pred; I did no such thing and I wrote to the department expressing my concern about this instruction. In due course my problem was professionally resolved and now, a year later, I have been told to remain on 1mg prednisolone as a maintenance dose (plus Leflunomide) and am happy with this.

I would advise you to write to the hospital rheumatology department with the details you have provided for us regarding being told to stop all medication and the effect that has had on your physical and mental health, ie the anxiety. I know that this may be asking a lot of you while you are feeling so low so an alternative would be to telephone the rheumatology helpline/secretary and request a call back from the rheumatology clinical specialist nurse where you can express your concerns.

Please come back and ask questions or whenever you need to ‘talk’.

[Judywalks in reply to 123-go]

Thankyou all those who have replied to my post. It’s very helpful. I am making notes of what you have said as I am seeing the special nurse on Tuesday. I feel more equipped to ask questions and to state my present condition more fully.

My son-in-law who is psychiatric trained is going with me.

[HeronNS in reply to Judywalks]

Excellent, so glad you will have support during the meeting. We'll be thinking of you. Do let us know how things go. Best of luck! 🍀🌷

[123-go in reply to Judywalks]

Brilliant ! You're doing exactly the right thing, Judywalks. The notes and having your son-in-law with you at the appointment will stand you in good stead for a solid two-way discussion. We are all rooting for you. 💐

[Thelmarina]

Goid luck JudyW - and always remember that you can ask to see a different rheumatologist. Are you well supported by your GP or have they left it to your rheumatologist?

[Temeraire]

My goodness, you’ve had a rough time. Agree with the others. Sounds like you need slightly more pred to me (every day - not alternate days). Maybe even 2mg daily. Think I’d be happy at that dose for life as its so low. Quality of life is crucial I think and you say you are achy, light headed etc. Stick up for what you want - so glad you have son in law with you. Good luck 🤞🏻

[Louisa1840]

All the best Judywalks. As others have said you are not being melodramatic at all. They have also said and I agree, that you have set in place all you need to do to resolve this current situation especially taking your son-in-law along!Know that we're all thinking of you and sending all our support. Tell us how it goes.......