been on 5mg steroids for PMR for 6 months cut down to 4mg all OK know down to 3mg my neck is getting tight & also my tinnitus has returned!

[norahmoores]

which I guess is because my neck and head muscles are getting tight - I was really hoping to get off this stuff but feel I am going backwards - any ideas please....

[Celtic PMRGCAuk volunteer]

Hello Norah

To have remained on 5mg for 6 months echoes my experience and has proved successful for others I have come across. However, having previously had a severe flare at the 3mg dose, on reaching the 5g point the second time around and after remaining there for 5-6 months, I only reduced in 0.5mg steps. and doing the drop on just one day of the first week, two of the second etc all the way to zero. Painfully slow but my body successfully adjusted to the slow withdrawal of steroids.

You don't say how long you remained at the 4mg dose, but you could try immediately returning to 4mg as that is where you say you last felt OK. If things don't improve within a week or so then you may need to go higher. Good luck.

[norahmoores in reply to Celtic]

Thanks for that I have had 4mg today and intend to stay on that for a while my Doc said go down a 1mg a month so I have had 4mg for a month then it was down to 3mg but that is where I am getting symtoms back again!

[Celtic PMRGCAuk volunteer]

Norah

A lot of people find it difficult to reduce below 5mg, and reducing 1mg a month at this stage is probably too much, as you have recently experienced. When well, our adrenal glands produce their own natural steroid (cortisol). However, when taking artificial steroids, they suppress that natural production. The adrenals need to start working again when we get to between 7.5 and 5mgs of Prednisolone as this is around the amount of natural steroid our adrenals produce when well. If we go too fast with the reductions there will be a shortfall which can lead to a return of symptoms. Remember the lower you get on the steroids, the higher the percentage drop, hence the need to make smaller reductions over a longer period of time. I do hope your symptoms quickly resolve now that you are back on 4mgs.

[norahmoores in reply to Celtic]

Thank you! you have been very helpful.

[Mackjanet]

Stick with it. I am now on 2 mg 5 days a week and feel great, but every reduction it's as if my body is protesting, and many of the pains come back but I've decided they mimic the original pain. Because I was determined to battle through this as long as my blood results were good, the pains move and change but do eventually go. Our bodies need time to make their own cortisone but it takes time, and while they're being told to wake up ie lack of oral steroids, they protest and if like me produce all sorts of odd experiences. I've had teeth and gum ache, ankles giving way, weak knees, sore shoulders terrible headaches but I am convinced my body will kick back in and these pains are but a shadow that seem real but really are just mimicking. The days I go without, Wednesdays and Sundays, my body really does kick in and I feel as good as new. I am reducing my doses at 6 week intervals. Hope this helps.

[polkadotcom in reply to Mackjanet]

It's an interesting thought, but most of us are unable to deal with such severe pain - and it is real pain - for a long time. I for one would not have been able to continue working and my quality of life would have been seriously impaired.

Apart from that there is always the possibility of a serious flare up which can lead to a major increase in steroid dose (which is always very disappointing and frustrating) if reductions are being forced, not to mention an adrenal crisis and that is very serious indeed.

I do hope your method works for you and you manage to get to a zero dose soon. With this condition there is never any 'one size fits all'. Good luck!

[Loco99 in reply to polkadotcom]

Hello Norah, I'm one of those hovering around the 5mg mark and can confirm that reducing the dosage when you are in the 5mg zone is more difficult, I've been down to 2mg back up to 3mg and am now back to 4mg and doing reasonably well. At 2mg I had more bad days than good and quite serious problems with my feet and ankles. My apologies for answering a question with another one but you mention tinnitus, I got this about the same time that PMR was diagnosed and was told by the doctors that it was not related to the PMR, is your tinnitus PMR related? Are there any other tinnitus sufferers in the group who could shed any light on this?

[norahmoores in reply to Loco99]

Hi Loco99, Well I cant say whether it is or not BUT when your muscles tighten in your neck, head & shoulders it sure makes my tinnitus worse! I was OK until the 3mg then the tinnitus was horried - also again not sure on this either but I suffer from IBS funny enough while on 5mg & 4mg all OK soon as on 3mg my IBS much worse so not sure on either of those things... but for me and knowing ones own body I think I am right on both - if this is any help to you....

[norahmoores in reply to Mackjanet]

Good luck with what you have achieved I wish I was a strong as you! but I do think perhaps I have gone down to quick - slowly slowly catch a monkey as they say - have upped today so nothing I can do about that - will get and stay on 4 mg but a bit longer than a month as you say 6 weeks - thanks for your input..

[Hidden]

I managed to get down to 3mg last Christmas. If I try to reduce I get the pain and other side effects (sweats) etc. This seems to suit me apart from trying to lose weight which is nigh on impossible without more exercise than I have the energy for.Therefore I have decided just to carry on with this dose until the autumn, summer is just too good a time to miss out on! My doctors surgery are not particularly interested and just give me repeat prescriptions! Good luck with your reductions.

[norahmoores in reply to Hidden]

Rawnie you are right the summer is to good a time to miss - my own doctor is away and to get any help from anybody else there is nigh in impossible so I have upped the dose and will worry about it all later - I have 6 dogs to look after and I am not going to waste anymore time on all this - I just HATE being on them...but life's not perfect is it...

[corralie]

Hello LOCO99

I developed tinnitus same time as PMR and GCA were diagnosed 18 months ago.

Now down to 5mg and still have tinnitus (never gone away) but do have very tight

head and neck.

Corralie

[norahmoores in reply to corralie]

Hi I don't want to sound doom & gloom but I don't think it will ever go away on 5 or 4mg tinnitus is there but liveable with but when went down to 3mg it was horrid! my Docs away for 2 weeks so will stay on the higher dose until he gets back - but don't think much he can do anyway....fed up with taking these tablets!!!