Follow up with Rheumy regarding GCA.

[Angelsmummy]

Afternoon everybody,but this is mainly for DL and PMRpro.Just had telephone call with Rheumy ( very sweet man!❤️)!my 3 month check.He was all in agreement with DLs 5 week plan of only going down 1/2 mg every 5 weeks,and said when and if I get to a lower dose,we will discuss an even slower taper.He agreed that the aches and pains are probably adrenals being a bit lazy and also the neck pain and ear pain on right side was probably to do with the bony spur on right shoulder.But regarding the tingly scalp and head pressure,wants me to go for blood tests tomorrow to check if levels are raised.I also told him NO TCZ,not now I have come this far.He said we would discuss it in the future if anything further happened but I still do not want it.Having a weary day today,shopping took it out of me yesterday,so am doing as we are meant to do and resting.Forgot to tell him that I have dropped 20 mg of Omeprazole just over a week now and no bad effects,so just on one pill now.So thanks DL and PMRpro for excellent advice a few weeks ago about ignoring his 1 mg taper every month!Back to watching the para olympics!xxx💐💐💐😜

[DorsetLady PMRGCAuk volunteer]

Wise man as well… rest up and enjoy Para Games.

[Angelsmummy in reply to DorsetLady]

Cheers DL,also,because we had so much to fit in during our consultation,when I said to him that the CRP and other markers may show normal,he said because they were so high when first diagnosed and since been low,😱😱😱😜 and bu🤬🤬🤬🤬me,I can’t remember the rest of his answer!……

[Grammy80]

It sounds like a great visit. I'm so happy the taper is going well. Kick back and enjoy those phenomenal athletes. What spirit💞

[Angelsmummy in reply to Grammy80]

Cheers Grammy,onwards and upwards eh?Seeing those athletes with all their disabilities,puts a lot of things into perspective doesn’t it eh?( Not when we are having really bad days though!😱Let’s hope bloods are ok tomorrow and then I can unwind my stress head a bit!Hope you are doing good as well?xx😜🐈🌼🌼🌼❤️

[Grammy80 in reply to Angelsmummy]

Amazing....to watch and witness what power the mind can have over the body. I couldn't do any of those things with full faculty and four limbs at 20~! Fantastic💞

[Angelsmummy in reply to Grammy80]

I used to limbo dance,mind you,the bar was Five feet high!🤣🤣🤣😜💐💐💐💐

[Sophiestree]

Can I ask why you don't want TCZ?

He sounds like a keeper!

[Angelsmummy]

Hi Sophiestree,as PMRpro said why was it offered when I was so low on pred?Then I think of Grammy 80,who gotdown to half a milligram, and on Actemera,and doing a very slowtaper and then when she dropped the last of it,she ended up back in ER with GCA return and problem with her good eye.DLsaid TCZ was not around when she got GCA with sight loss like me,she did it with a very slow taper,so I am hoping that I can do the same.I did not do at all good on MTX or Leflunomide in fact I cannot take many meds without a reaction,must be my metabolism or something.Just VERY lucky that pred has been pretty kind to me throughout,apart from the normal side effects that people get.I appreciate that TCZ has done wonders for many of you,but if I can possibly not go down that route I will be happy.Hope you are keeping well?And YES,my Rheumy is a good one,think that I have to “ suggest “ things to him and 9 times out of 10 he is in agreement.He is very watchful and always in contact,as are his nurses,who are always at the end of the phone if I have issues etc.xx😜🌼