Help!

[maxgarry]

Further to my recent posts. After having suffered increasingly over several weeks trying to reduce my steroids I made a decision over the Xmas period to go back to a level which I felt comfortable. I had tapered down to 3mg, only because my GP and Rheumatologist insisted that I no longer have PMR. However, after increasing my steroids to 10mg I feel quite a bit better, although the issue is clouded by other problems.

I have this morning seen my GP who is annoyed that I have increased my dose and feels that I am going against their advise. When I pointed out that I felt quite a bit better he proceeded to list possible side effects. My question to him was should I worry about side effects or feel better! If PMR is not an issue why am I seeing an improvement in my symptoms. He couldn't answer, but still insisted I reduce steroids. Frustration is an understatement!

[PMRpro Ambassador]

All I can say is that if the symptoms have improved with a higher dose of pred - they cannot blame it on fibromyalgia, it isn't an inflammatory condition and doesn't respond to steroids.

Do you have access to a different GP who might have a better understanding of PMR and the use of steroids? The doctors you have seen so far obviously don't realise that as long as you are on an adequate dose of pred it is impossible to predict that you no longer have PMR - that happens once you have reduced successfully to zero pred and maintained that for some months without a return of symptoms.

[Breconblue]

Sure someone will be along who knows much more. However, I’m in a similar plight, A private Rheumatologist decided ( I don’t know why, really other than he said PMR did not affect below the elbows and knees 🤔) I didn’t have it either. He told me to come off Pred every 2 weeks. Than call his NHS secretary if I had pain and stiffness and “ we can decide what next” Well, as most people know, getting a phone call through to NHS secs is near impossible, much less get an answer, so I have been tapering every 4 weeks. I have a stash...I’m on 3 mg now and intend to stay there as we have a hol booked in a camper van in NZ so I’m not keen on being immobile .. let’s us know how you get on

[jinasc in reply to Breconblue]

Where do you live, we might know a good Rheumy near you?

[maxgarry in reply to jinasc]

I live in Derbyshire, but am prepared to travel to find some constructive help.

[jinasc in reply to maxgarry]

Big County...........can you give nearest big City or Large Town.

[maxgarry in reply to jinasc]

I am handily placed for Derby, Nottingham and Leicester

[jinasc in reply to maxgarry]

Thanks now I can try and find out..........I have a suspicion that a lady in Nottingham had to travel.............

I will do my best as soon as I can.

[maxgarry in reply to jinasc]

Thank you

[jinasc in reply to maxgarry]

nuffieldhealth.com/consulta...

Waji Hassan, trained one of the best Consultants I know who works in Rheumatology (specialism PMR & GCA) in the local hospital where I live.

Waji works in the NHS and also does private.

Hope this helps.

[Croft9232 in reply to Breconblue]

Hi I travelled for 2 weeks last July in a Camper Van with my family touring the South Island of NZ, which was stunningly beautiful.I then was on 10 mg Pred but decided to up to 12.5 mg for about 3 weeks as I too was worried about my PMR and symptoms feeling worse. I came through it all ok including the long flights and once home tapered again, currently on 7 mg though struggling a little at the moment .

Margaret.

[piglette]

I get so frustrated with these doctors who bully us. Do they really think we are taking steroids just because we enjoy the side effects and the taste!

[Lindalang]

I understand how you feel.I was on 10 mg for many months because my pain was so diminished by that dose.

18 mths after 1 st diagnosis.

Saw a rheumatologist who almost screamed at me ‘why are you on such a high dose look at your moon face’

Refused to see her again- told the rheumatology nurse I couldn’t deal with my medical problems and her manner and was put on another’s list.

(Diagnosed Dec 2017 25 mg initially)

I did start reducing but very slowly the method recommended here and took methotraxate as suggested but that had side effects so stopped it

Currently on 4 mg reducing slowly to 3- was advised by rheumatologist I trust not to worry about reducing too much in winter months once below 5 mg.

Good luck