Had to increase PREDs need advice

[369yds]

Been reducing as RHMY dosnt think I've got PMR and wants me off steroids . So does the cardio lady. My original PRED was 15 mg and I've had a few hick up reducing but got to 9 mg but going to 8 is a step to far. I'm doing the slow slow method , but the last week has been hell , I literal had no sleep when I lay down at night aches and pulsating through my arms and legs like there a toxin that's pumping around and my body clock won't switch off to rest 6.30 and no sleep all night! I have a bit of a chesty cough too which I think has brought this on . So I decided today to up my dose to 15 mg and my QUESTION is how long should I stay here before I go back to 9 where I was safe with just the odd ache. Feel so low at the moment when no ones what I've got bloods not showing anything but this aching IS real and no one knows or understands the turmoil apart form you guys .

Much aprieacted

[Hidden]

Hi 369yds,

I was looking at your previous post, do you mean postural tachycardia syndrome ( PoTS ) for the disorder that the cardiologist thinks you may have?

It is very unfortunate when your bloods stubbornly refuse to show the inflamation coursing inside of you. It's been the undoing of many of us on here.

If you have no faith in your Rheumatologist and don't feel listened to then your only option is to seek a second opinion. If your GP is amenable then you could manage your PMR with them and reduce very slowly.

Don't waste energy you can ill afford trying to argue with consultants, bitter experience has taught me that once their mind is made up then that is that. Try to seek a second opinion from a more open minded Rheumy, if you mention your general location then hopefully the experienced members of this forum can help you find one.

Best wishes

[369yds in reply to Hidden]

Thank you for replying , yes I know I will need to seek second apoion are RHMY but when My final test for POTS as you mentioned above is in March where I shall be put on a tilt table! But I personally don't think I have this I've not lost weight or feel faint? in the mean time I'm hurting up dose to 15 today and wondered how long on that dose would you recommend before i go back to safe 10 and then start reducing. I take vit D , opermitozole , the bone once week pill and now been priscibed amatriplyne which dose not seem to be helping at all been on this for three/ for weeks now!

[369yds in reply to Hidden]

Sorry Keys I live in Bourmouth Area , but willing to travel .

[PMRpro Ambassador in reply to 369yds]

I've sent you a private message - you should get a notification on the top green bar.

Mind you - has anyone else had problems? I went through all the posts this morning via the weekly notification - this afternoon I have had email notifications for about 15 posts from over the weekend that I looked at this morning thinking "I haven't seen that!". Thought it had been quiet!!!!!

[369yds in reply to PMRpro]

I've got message and replied , thanks x

[PMRpro Ambassador in reply to 369yds]

I haven't had a message back - this forum is really playing sillies for me this week!

[maria40 in reply to PMRpro]

Yes, I've noticed three new posts today that I definitely haven't seen before , although dated 2 days ago.

[Runrig01]

Hi 369yards, is it purely on your blood results that Rheumy is dismissing PMR. Did you have a rapid response to Prednisolone? As Keyes says many of us have PMR and normal bloods. 20% of all PMR patients have normal bloods. I am fortunate that after a lots if tests and a Pred trial my Rheumy accepted I'm Atypical, I was 46 when this started. As Keyes says you could perhaps let your GP manage if he believes you have PMR, or you seek a second opinion from an open minded Rheumy. Print off the guidelines on PMR which state that blood tests can be normal, and take to GP. I'm sure someone here will be able to suggest a good Rheumy near you. I wish you luck,. X

[369yds]

Hi runrig01 , yes last march I was in agony hands legs not able to rest at night due to aching , had more or less symptom free after a day or two on PREDs . Waited until October to see RHMY who mad me feel useless and as if I was waist ing his time, deflated or what I came out and just cried because I ve really tried to reduce and managed quite well till now. But when it gets you it gets you where I am at the minute. So once March with my Pots thing is out t he way I can go back to GP if pots is either ya or na. ! Once again thanks it dose help to chat with some one who understands .