Still on 30 mg - temple pain and eye pain has returned. Saw the optometrist yesterday - she said everything is fine - just like everyone else. Today saw the rheumatologist - my doctor was out and saw a different one - and what a blessing that turned out to be! He was upset that the front office didn’t get me in sooner. He feels that I should have stayed at 60mg for one month before any tapering. I’ve told him of all the doctors and tests I’ve done. He says I’ve done my work and now he’s ready to jump in and figure out what’s going on!! Yay! To finally be heard!!! I hope he follows through and does his part. He said if I had no symptoms at 40mg - then go back to that for the next month and hopefully in that time we can find out what’s going on. He is running more extensive blood work - throwing out a bigger net to see what we find. I will go to the neurologist and he said they can work together to see what they can find out. Right now it’s symptom based - and that’s all we can go on! My family wants me off prednisone - I’ve adjusted to it and I have to ride it out - I wish they would understand. With this new doctor- I feel some hope that we might figure this out!
Thanks for your advice and support!
🌺
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Kern1410
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I think you are so lucky to fall into the hands of an obviously dedicated doctor..
Regarding family insistence that you get off Prednisone. Well we all want to get off asap, but unfortunately it takes time and patience. Read advice that some of our moderators give..their advice and experience is second to none.
YuliK.
Family and friend negativity regarding Prednisone is a familiar subject on this forum.
People who haven't suffered either pmr or GCA , literally have no idea what they are talking about.
Sorry for the late reply. They still haven’t formally diagnosed me. I started the prednisone on 5/21 - started at 60mg and the weaned down every 3 days - 60, 40, then 20 for 5 days - when I got to 20 my symptoms came back so I went up to 50 and started again. Then did 50 for 5 days, 40 for 5 days, got to 30 for 5 days and light symptoms came up. Saw the rheumatologist who was upset about all this and told me to go back to the dosage where I had no symptoms and stay there till we figure it out. I’m at 40 mg a day but my eye started having problems. Don’t know what to do now!
Oh my goodness. They are still messing it up. Go back to dose where no symptoms and stay there if that was 60mg. The reductions they have you doing are ridiculous. I would be at 60mg for 3weeks or more but I am sure other GCA members can help more. 5 days then drop doesn't even sound like it's doing any good whatsoever. I think you had the guidelines linked before. The table for GCA should be your guide. I hope you start to feel better.🌻
They all (doctors) still insist I don’t have GCA but this Rheumatologist thinks something is there so we are holding steady at 40mg for the time being - no tapering. But with my eye acting up I think I might go to 50mg and see if it calms down.
I think if you do and just leave a message with the Rheumy saying that you are worried about your eye it should be okay or it may stop them dragging their feet so much. 🌻
Thank heavens for this kind of doctor. My children think that Pred is some form of indulgence too. They were particularly perplexed to hear that it doesn’t make me feel good, it just helps me to be mobile. I blame the gym bunnies.
I agree. The first 2 weeks were the hardest but I think I’ve made my peace and acclimated myself. Trust me - I don’t want to be on it - she bad for many others reasons...
The family do realise that you could loose your sight without the treatment. They obviously don't understand yet but that's to be expected and at the moment you don't need the pressure to be the one that educates them. Ask them to to look it up themselves in private and that the effects of pred will reduce and can be managed once the inflammation settles a bit more. Just rest and recover for now you are ill.🌻
Ask your family to stop giving you an opinion but just give you their help and support at this time.
We all know that it comes from a place of love and worry about us , you can let them know you understand that , but also tell them that at the moment their opinions on what drugs you use or things you should do , until all the details are sorted out , are not that helpful and actually make dealing with things more stressful for you.
You can let them know you are getting good advice from people who actually suffer from these conditions from an experienced support group and need to rely on getting help from the doctors and informers evidence first before discussing the details with them.
If that help also includes drugs we would all prefer not to take then so be it.
Sometimes you have to bite the bullet and accept you have to do things for your health that you don't want to do but need to do if you want some quality of life back.
It's honestly good to be kind but honest with your family and friends early on with these sorts of illnesses about what you have got and what you want from them.
Then they can choose to help you in the way you need from the beginning , rather than help you the way they think you need , or choose to push off , leave you in peace to get better and relax , and not stress you out.
If they get too opinionated on it there are always sticky toffees , perfect to keep their mouths shut!😋😁😂😂😂
Take care and glad you are getting closer to the right course you need . Keep strong x
Hello Blee,your post is spot on so cannot add to that except to say however much we ourselves never wanted to have to take steroids,Prednisolone is the only way we can relieve the symptoms of PMR/GCA,and hopefully give us a chance to recover.lt is hard to explain to family and friends the effect this illness has on us,we may look OK but are certainly far from it !
"Difference between an Ophthalmologist, Optometrist and Optician......................
An ophthalmologist — Eye M.D. — is a medical or osteopathic doctor who specializes in eye and vision care. Ophthalmologists differ from optometrists and opticians in their levels of training and in what they can diagnose and treat. As a medical doctor who has completed college and at least eight years of additional medical training, an ophthalmologist is licensed to practice medicine and surgery. An ophthalmologist diagnoses and treats all eye diseases, performs eye surgery and prescribes and fits eyeglasses and contact lenses to correct vision problems. Many ophthalmologists are also involved in scientific research on the causes and cures for eye diseases and vision disorders.......................................
An optometrist is not a medical doctor. An optometrist receives a doctor of optometry (OD) degree after completing four years of optometry school, preceded by three years or more years of college."
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The Rheumatology Saga Continues!
Upset
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