Need a little help, I was doing so well.

[Buenavista]

Hi guys,

Been reading all your comments every day with interest. Having had PMR for about 18 months and have been on steroids and anti-inflams etc etc, for nearly 12 months. I started on 30mg and in November I got down to 10mg. Then after reading all your comments, I came down half mg every 2 weeks, which works really well, except for 2/3 days of empty head. I got down to 6 1/2mg and the pains in my arms and hips came back. Left hand has always been stiff and painful, now the right hand has joined in, so I am going back to 10mg.

I now listen to my body, but how would you guys who have been there, go back down. Half mg every 2 weeks again or a bigger drop.

I am have tests and xrays on hands to see if its more than PMR, as in Rh.arth. first week in April. My English Rhumy wants me to go on Methotrexate, but I don't want to go on this.

I note that a lot of you guys have such different opinions from your docs and rhumy's. So here's a new one from my Spanish rhumy. He wants me to go hown to 5mg for 1 week and then zero the next and do this for 4 weeks, then finish because he thinks I look fit. If he could see me this week, he would not be so keen. Sometimes I think us, as in PMR sufferers, know better than most of the docs.

I can cope with the pain, it's the head being on different planets, I don't like and the tiredness. Which is probably my fault, as I set out impossible tasks of work, then get there and do more.

Look forward to your comments.

Best regards

Buenavista

[Celtic PMRGCAuk volunteer]

Hello Buenavista

Very wise of you to increase back to 10mgs. If it was me I would stay there for a couple of weeks and then if ok start reducing back down to the dose at which you last felt comfortable which is perhaps 7, if as you say you got down to 6 1/2 when the pains came back. If the half mg reduction every two weeks worked before then it might be best to stick to that again but once you get to 7 stay there for a little longer before reducing again as below that level may just not be sufficient to control your inflammation for the moment.

I've never heard of anyone reducing following the method suggested by your Spanish rheumy. 5mgs can be a sticking point for many people and we need to spend a lot longer at each dose below 5mgs to avoid the risk of a flare - the lower we get, the higher the percentage drop, added to which our adrenal glands will be battling to get back up to speed with their natural production of cortisol, having been suppressed by the artificial steroids. The slower the reductions, the less likely you are to have a flare in symptoms and the less likely you are to succumb to PMR again in the future once in remission. I do hope you feel better soon.

[Buenavista in reply to Celtic]

Hi guys,

Thanks you very much Pats and Celtic, for your comments.

I had carpet tunnel opp and I watched the opp being done. The specialist told me I now know more about this problem than him, because I have had the pain and know what to look for. I think this applies to PMR sufferers, because you have been there and the best advise you give is to listen to your bodies.

I am going to take a Spanish friend with me to the rheumy to explain your comments, because I am sure he does not understand enough of the problem. He thought, because I looked in good health last time, the PMR was on the way out.

The answer to Pats question, when I was on 30mg, it took all the pains away, arms, shoulders, hips, buttocks etc. But my left hand always had pain and stiffness and only when I reached 6 1/2 and 7 did the right hand start. But no where near as bad, also my right arm has always had a small ache. The biggest problem of all, as I said, is the head. Which doesn't help, as I have a very bad case of tinitus, which spaces my head out on it's own when even a little stressed.

I will do what you suggest and stay on 10mg for 2 weeks and then come down 1/2mg every 2 weeks.

Many thanks to you.

Buenavista

[Hidden]

Hi Buenavista,

Firstly, I would be interested to know how 30mg of pred effected the pain in your hands - did it help at all. If the steroids did cure the pain, then at what dose did it return and how fast were you reducing the doses at the time?

You are lucky that your PMR is only active in your arms and hips as most folks have the condition in all the major muscles of the shoulders and hip areas. PMR can cause symptoms in other parts of the body including the hands and feet.

Once prednisolone has been taken at a medium to high dose - above 7.5mg for more than a few weeks our adrenal glands go to sleep therefore, it is very important to reduce very, very slowly below about 10 mg. The adrenal glands are being nudged to wake up at these lower doses and great care has to be taken with reducing as it is very easy to induce a flare in the illness.

I'm so pleased you are upping the dose to 10mg, but as you hit trouble with your last reduction plan, I would recommend reducing by half a mg every 2 to 3 weeks until you reach 7.5mg. If all seems OK then proceed with great care as you will be relying on your adrenals to contribute from then on. If you have any increase in pain or feel generally unwell for more than a few days then return to the dose on which you felt comfortable and hold it there for a while until you recover, then try again, but leaving even more time between drops. Never attempt a reduction in dose if you have pain.

I do not understand what your Spanish rheumy means regarding your reduction plan - if you are on 10mg and then reduce to 5mg you will be in real trouble!

Pats

[Buenavista]

Hi guys,

I have been on 10mg for a week now and I'm feeling a lot better, thanks to your help and advice.

Best regards

Buenavista