GCA - after flare

[Janeval]

After 2 years of GCA I'd tapered down to 3mg, since Jan back up to 25mg after a flare. I am now tapering down again- Doc told me to do 5mg reduction over 4 weeks but I am doing 2.5mg as the first day of doing 5mg reduction I started getting mild symptons back. My Doc is insistent on going by my blood markets-ESR & CRP & not by the fact that I still have symptons. He says- it can't be the GCA, you mustn't 'self medicate' & it must be something else. Even on 22.5mg my temple pain( although very mild) is still there. However, after the last 2 blood tests I have not had my CRP results- for some reason they didn't do them even though they were requested! So my Doc is going entirely on my ESR results- as far as I understand the CRP are the most accurate & relevant ones- is that right? I'm flying out to Denmark on Fri to visit my son - do I go up to 25mg again the day before I fly & again before I fly home next week? Also, in 2 weeks time im due to have my Cataract done which I am now concerned about.

I also don't have a Rheumy now as he's off long term sick & they have no idea who I'll see or when. Advice needed on what to do please.

[PMRpro Ambassador]

When you get symptoms immediately you reduce the dose - as you describe - it is often your body protesting at the change in dose, steroid withdrawal symptoms, and they are often just the same as the illness for which you are taking the pred so it can be very confusing!

Sometimes I really do just wonder - under the circumstances, what else is it likely to be? Why shouldn't it be GCA? And the markers often tend to lag behind,

Where are you? Are there other GPs in the practice with a bit more nous? And why are you worried about the cataract op?

[Janeval in reply to PMRpro]

Yes, I did wonder about the 'withdrawal' symptons- but how long should it take for them to stop - after reducing my dose? I have no idea what the 'something else' could be- I really don't think the Doc knows much about GCA. I have no idea of there is another Doc in the practice with any more knowledge & as I said I don't have a Rheumy now- although he wasn't much good either. I'm worried about the Cataract op of my symptons are still niggling. As the surgeon said - they need to be sure that the GCA is not 'active' & at the moment I'm just not sure. However it's another 2 weeks before that so hopefully it will settle down before then. 🤞

[PMRpro Ambassador in reply to Janeval]

How can they be sure? Think you need to speak to the eye surgeon.

Not a good situation and one where you NEED someone who knows what they are talking about. Is contact with a private one an option - where are you? Not cheap of course so possibly not an option but your GP is out of their depth.

Withdrawal should improve over a few days to a week - but steadily improve, not worsen.

[Janeval in reply to PMRpro]

I saw a private Consultant in Lincoln ( im in Lincolnshire) at the beginning of Jan when I had the flare. He was ok, but again- different advice on reducing- dropping 5mg every 4 weeks - not a gradual reduction & I knew that after past experience my body does not like a sudden drop. However, he wrote to my Doc & he is now going by that. I am not doing the 5mg drop & at present only the 2.5mg. However, when I get down to 20mg mg I shall be even more careful. I paid £200 for half an hour & I really didn't come out feeling much more confident about his 'advice' than I did before & his passing shot was that ' i could manage this myself- with back up from my Doc' - if needed. Doesn't give me any confidence with any of them- especially after what i went through at the beginning of the year with 111 & then A & E. I feel I get far more sound advice from this forum.

[PMRpro Ambassador in reply to Janeval]

That is part of the reason that we suggest Rod Hughes if at all possible because he supports slower and realistic tapering that (above all) suits the patient. Yes, we CAN manage it pretty well but it requires some basic support from the doctor providing the pred!! Already had someone this last week whose GP refused to provide a refill because they had been on pred too long. Anyone would think we LIKE being on it!!

[Janeval in reply to PMRpro]

Would I be able to have a phone consultation with him?

[PMRpro Ambassador in reply to Janeval]

He usually likes a first consultation f2f I think but subsequently phone or video calls are an option. I did get the impression from someone that he will videocall for the first meeting as well but I might be wrong there, I'm also fairly sure the first appointment tends to be more than 30 mins - again, could be wrong.

His secretary Jody will explain all. The email address is correct - not sure about the phone but if you posted and asked there are several on the forum who see him and would have the latest phone number.

finder.bupa.co.uk/Consultan...

[Janeval in reply to PMRpro]

Thank you for that. I will contact Jody

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

5mg might be okay in higher doses of GCA-but not when you to about 25mg.. I changed then to 2.5mg down to 15mg then 1mg until around 6 or 7 when I only dropped 0.5mg

[Janeval in reply to DorsetLady]

Thank you. Yes, seems sound advice👍

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Worked for me! 😊

[DorsetLady PMRGCAuk volunteer]

For heavens sake….another one who doesn’t understand GCA..very worrying. As PMRpro has said, is there a more sensible GP in surgery…

My advice is no taper before on whilst on travels… so back to 25mg and stick there if you’re sure it’s not just steroid withdrawal.

Cataract ops are nothing to worry about.. or are you concerned re level of Pred?

Edit -just seen your reply to PMRpro re op - it’s something you need to discuss with surgeon.

[Janeval in reply to DorsetLady]

None of the GP's I've seen seen to know much atall- in fact when i spoke to one of them he was obviously reading from a book as he said to me 'the guidance says....' & I could hear him turning the pages!!Yes I will increase to 25mg again from tomorrow & see what I'm like when I get back next Tues.

I'll also give the surgeon a call.

[PMRpro Ambassador in reply to Janeval]

The answer to THAT is "it is guidance, and that is all, It also says it should be adjusted for the individual patient" But they miss that bit ...

[Janeval in reply to PMRpro]

Yes & no one I've seen so far seems to listen to what I'm telling them & adjust things to me! I thought I was nearly off Pred when I got down to 3mg & now I'm struggling to get down below 25mg again. All my Consultant ever said is that he wanted me to go on Methotrexate! I really don't feel confident atall with the advice/ support I'm getting & it's so frustrating but also quite frightening

[PMRpro Ambassador in reply to Janeval]

I think the lack of being heard is far and away the worst aspect of poor treatment. When you feel heard and acknowledged it takes away so much stress about the blasted disease in the first place so you can concentrate on the rest.

[Janeval in reply to PMRpro]

Precisely & when you see different Doctors/ Consultants who don't seem to know as much as we do it is quite worrying & disturbing! Whatever happened to 'listen to the patient & what they're telling you they're experiencing', I really don't know!