I was on 60mgs of pred December 2018 its now April 2020 and its been a huge struggle Am now coping with lots of rest on 3and a half mgs for the last week. Its been very very slow. I gave up methotrexate 2 weeks ago I feel better for it. My stomach is better no nausea my balance still poor. And no I havnt seen or heard from the Rheumy dept despite over 5 mornings given over to attempts to make the contact which is between 9 and 11am all failed Blood tests none since the beginning of December cancelled not by me. 2 shielding letters and a sort of algorithm from the local NHS inclusive of a question and answer system as to which category I fall in. I am needless to say totally self isolating Hooray for the jolly postie in his lovely red van or indeed the recycling gentlemen who understand wave and talk to me Lots of phone calls 2 Easter cards a lovely bunch of flowers no human. I now dream of shopping and mingling Driving around a car park which is nearby just to keep my car remembering what its for.
Amazing difficulty getting scripts delivered in the end by a docs receptionist hand delivered it to me on her way home after 5 days of trying. It was actually important anti coagulants I got a delivery from Tesco. What a success after many many hours of trying And now I have the newspaper and know I don't want it on line.
Arms around everyone take care of yourselves as best you can.
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Valentina1
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I hope you manage this very difficult part of the taper. Keep resting and hopefully getting your burst of red van etc. You reminded me I need to at least start my car at some point if it's 12weeks. I imagine the break down people will be busy once people start to drive again.
I see you have GCA and to be down to 3.5mg in less than two years is quite fast.
I do not want to worry you, but just make sure watch out for any returning symptoms.
Often when you get to or near to 2 years a flare can occur. I hope that this does not happen to you............just be wary.
I am not a medical person, but I did have GCA and it did not go into remission until 5 years. Those 5 years included 2 flares. This does not happen to everyone, I just want to make sure you keep a watchful eye.
thank you. I admit to be extremely tired and by no means well Only occasional hints in my head of the pain I suffered. Thinking it may be age and adrenal glands I try not to go on about it too much. I am shielded and as such rather used to feeling lonely but fortunate and tell myself no you are lucky in a lovely environment Blood tests last Wednesday first since early Dec last year Do I ring or get a phone call I don't know the answer yet as its a bank holiday. Thank you for your care I do appreciate it.
As jinasc says says your reduction has not been ‘very, very slow’ - in fact just the opposite compared to most.
My journey from 1st to last Pred was 4 and half years - but I had symptoms for 18 months prior to diagnosis - so 6 years in total - but with no flares.
As you say you “are coping with lots of rest” - just be aware your GCA may still be alive - so don’t let it get out of control! Just watch out for any symptoms and act accordingly.
thank you I don't do more than I know I can withstand At nearly 83 on ones own its mightily important for me. However the relief I am beginning to feel from a reduction in meds is worth it. Brain fog voice changes writing gibberish and not realizing it Listen to your own body everyone . Tired yes very easily. Believe me I have loads of experience of listening and of doing just that. Not just for myself but for one of my sons so many years ago and repeated for myself with 4 DVTS and anti coagulation for over 20 years self testing no problems no docs visits. Giant cell for me was caused by undue stress I believe that. It gave me prednisolone dependant diabetes another reason to reduce None of this applies to everyone its totally personel One good point I lost a fair bit of weight but also hair changed.
I do sincerely wish everyone safe keeping through these awful times there will be a bright side eventually if we all do as asked
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Any links reducing PREDS and worsening Sciatic?.
Weight Loss!
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Chest infection
