Susie, I have had PMR for 18months and have done pretty good. I am down to 3mg one day and 4mg of predis olone the next. Soon

[Nickie]

I will go to 3mg for14 days and then 2mg one day and 3 the next. for 30 days. I would like to know if anyone has completely come off of all medicine and stayed off and felt good?

[suzieh]

I am also doing quite well reducing - currently on 6mg ; i have also had PMR for about 18ths but only started the steroids last Xmas. (20mg) I reduced to 15mg after 5 days as I felt really hyped up and shaky on 20mg (Dr said this 5mg reduction was ok as it was within 2 weeks of starting the steroids).

After the initial 2 weeks you do have to reduce very slowly (as you are doing) 1mg per month reduction or less - always guided by blood tests, how you feel and Drs advice.

I don't know how many people get off the steroids and stay off. I don't suppose many success stories get reported on here as people get busy doing other things. I will try to encourage others by keeping up posts etc when I get to zero!! ( I am a great believer in positive thinking!) The only personal friend I know who has had PMR has been on them 2 X . She has encountered 2 bouts of PMR - with a 2 year gap in between when she was on zero and felt fine.

[Whittlesey in reply to suzieh]

Glad to hear this, Suzieh. Hope you can keep your dose low. wishing you health, all my best, Whittlesey

[Whittlesey]

This is a good question and I, too, would like to know if there are many with GCA who have come completely off steroids, without Cushing's syndrome and feel ok? I am down to 5mg per day and would like to go down lower. I hae been diagnosed with Cushing 's due to steroids -- symptoms. Blood tests still ok re: Cushing's. Get extremely fatigued. Thank you. Whittlesey

[Narducci]

Hi, I was diagnosed with GCA almost two years ago. I have got down to 8mg of prednisolone a day, but it has been a struggle. I have a sister who has GCA and she was on steroids for several years, and thankfully only very occasionally gets a headache. Other than that she is well.

All the best and hope you manage to cut down your medication and stay well too.

[tomasina]

Narducci,

I was diagnosed with GCA three years ago and was on 60mgs. Prednisolone to start, with a gradual reduction I got down to 7mgs. daily and then commenced on 15mgs. Methotrexate weekly together with the gradually reducing Prednisolone. I got down to zero reducing by 1mg. a month, however, after three months, although continuing to take Methotrexate I developed PMR symstoms, shoulder, hip and knee pain and stiffness. Went back up to 10mgs. Prednisolone with relief achieved within a week. I am now back down to 7mgs. Prednisolone daily and 10mgs. Methotrexate weekly. I feel ok, but never 100%. Continue to keep positive, I am sure we will come out the other end!

Tomasina

[mimopip1]

You are so lucky I have been with PMR for 3 years now started on 25mg nothing had to go up tp 60mg befoe pain relief. Down to 17mg now again the best I have managed is 15mg then it all starts again. I am 55 years old and lead an active life only through Pred. Would love to come off them.

[sara4]

I have had pmr and gca for just over 2 years. Started on 40mg, and after a difficult first year have managed to get down to alternating 1mg and 2 mg. Still have some muscle pain and prm stiffness but can cope with that. Hope to reduce to zero by the new year. I do know several people on the other pmr/gca forum who have successfully come off steroids.

[wendy_bullock1947]

Reading all the replies I think our bodies react differently as there is never a set pattern so to speak. I. Started on prednisolone and at the end of two years came off them and went on methotrexate, which I felt didn't do much so came of it and had more pmr episodes,so,back to rheumatology doctor and back on 5mg prednisolone,which is helping.Good. Luck

[jinasc]

Yes, there is a 'Club Zero' on pmrandgca.forumup.co.uk and they all keep in touch. We need positives.

People do sail through PMR, others are more complex. Remission does come along and some people with PMR sail through it in the two years quoted.

[optimist-ok]

Similar to other replies I have had PMR/GCA for just over 2 years. Came down from 60mg preds to 5mg with help of Methotrexate but in Aug this year had to go back to 10mg preds as GCA symptoms came back quite severely. Now on 9mg from this week with 15mg Methotrexate & feel much better at the moment! A very hit & miss treatment for these conditions it seems & different for each case. I am 72yr, (was very active before all this struck!) so maybe age plays a part in how people respond to treatment?

[Celtic PMRGCAuk volunteer]

Hi all - some reassuring news for you. I came off steroids almost 18 months ago after battling PMR and GCA for 6.5 years, 5.5 of those on steroids.

Hated the thought of taking steroids but hated the year of non-diagnosis even more!

For anyone getting stuck at around the common sticking point of 5mg, what worked for me was staying at that dose for 5-6 months after a flare necessitating an increase back to 10mgs. Once stabilised for this long stretch back at 5mg I reduced by just half a mg to each new dose, taking the new dose on one day of the first week, two of the second, etc. - so 7 weeks to reduce by just half a mg. A snail's pace but it worked and I reached zero Pred, probably by tricking the body into not noticing the tiny reductions - certainly I didn't suffer any steroid withdrawal pain with this method. Slowly slowly is key, so stay positive, knowing that there is light at the end of the tunnel, even if there are a few twists and turns along the track. Good luck everyone!

[Brevon]

Hi All - I came off steroids at the end of March this year after 6 months at 1mg a day. I had PMR for four and a half years and had one flare at 5mg in that time. Since March I have gradually built up my energy levels through cycling and was delighted to experience my progress to a higher level of stamina each week. I had previously tried to exercise with gentle aerobics but found it was too aggressive and I feared my PMR would flare again. Occasionally I have had a day when I have felt tired and I have taken it easy and there have been infrequent bouts of aching neck and shoulders which had been constant throughout my PMR. Otherwise, I am going from strength to strength. I saw my rheumy last week and she is pleased with my progress and is monitoring me for another 6 months. I am continuing with Vitamin D3 and Fosamax as I am osteopoenic and I will have 2 yearly checks for osteoporosis. I think I am fortunate in that, living in France, the French health professionals recognise PMR and I am well cared for. I did not think there was a light at the end of the tunnel but once I felt positive enough to stop the steroids - my blood tests showed the PMR had gone into remission - I have never looked back. I hopes this helps.

[triker]

Triker,

Pleased to confirm that two months ago my GP gave me the all clear from PMR. Originally undiagnosed for eighteen months and being told that at 73 years of age it was just "wear and tear", until I had to crawl into the surgery on my knees when so fortunately, a locum recognized my condition. Oh the blessed, virtually instantaneous relief from Pred - then at 15mg Pred daily. It took me twenty months to very gradually reduce to zero, with several flares and my GP not allowing me a visit to my rheumy - but eventually I'm without pain. I'm hopeful it will stay away. Hopefully you and others suffering will get clear too. Thanks Sambucca for mentioning the Club Zero, I'm such a lucky man but only the future will show whether I remain clear.

[Whittlesey]

Hi Nickie, I'm glad you're down to this low dosage. I have GCA (2012) and also have gotten down to 3mgs a day. I was taking 10mgs of methatextrate by injection, every week, but lowered that and finally ended that. I'm worried about going lower, because this seems to keep the disease - "in check" for now. I also, would be interested in knowing if any one came off completely and is "ok". wishing you health and congratulations, Whittlesey

[piglette]

My sister's godmother got PMR and GCA when she was 67. She was on steroids for eight years. She is now 93 and just incredible, sound in mind and body and looks fantastic. She still remembers the pain though!