Some good news.

[Buenavista]

Hi guys,

Have just seen my 3rd specialist regarding my hands. No RA, so it's all down to PMR. The specialist wants me on pred for another year. I am down to 7 1/2mg again and reducing 1/2mg every 2 weeks. Also, for the last 2 weeks I have sorted out the times to take all my tablets, as you guys suggested. But something very strange has happened. I stopped taking the anti inflammatory's totally. There was no problems, but out of 13 side affects, the worst by far being my head always on a different planet. It just cleared after months, any ideas?

On the subject of sleeping - you guys asked about not sleeping. I have never slept well, if I get past 2am - 2.30am, I am doing well. But a friend gave me some pinky's, they are not addictive, Kirkland Allergy Medicine. They make you drowsy after about half an hour. I try to go as many nights as possible without taking anything. Then in the end I have to sleep, so I take 2. I do keep waking up, but they allow me to go back to sleep. Maybe this is worth a try. Please don't tell me they shouldn't be taken with pred, etc.

Best regards

Buenavista

[polkadotcom]

They are an antihistamine med, used for allergies. The drowsiness is a side effect as it is of many antihistamines. I don't know how much they cost, but you'd get the same effect with Nytol.

[Celtic PMRGCAuk volunteer]

Hello Buenavista

Good to hear RA has been ruled out - PMR is quite enough to be going along with, isn't it!

It does seem a bit too much of a coincidence that the woolly head has cleared so soon after stopping the anti inflammatory doesn't it. Many doctors warn against taking anti-inflammatories alongside steroids due to a double whammy attack on the stomach, kidneys etc. I believe you have been taking an anti inflammatory which isn't as commonly used as Ibuprofen for instance - did you check with your pharmacy regarding its compatibility with Prednisolone?

Be very careful to slow down the reduction especially as your reach the 5mg dose - half a mg every two weeks could then prove too big a drop, as the lower the dose, the higher the percentage drop - the body has to be 'fooled' into not noticing the reduction and this is best achieved by dropping in smaller amounts and over a longer period. Good luck.

[Buenavista]

Hi guys,

Thanks for your comments.

The Allergy Medicine I told you about is 13.95 for 600 tablets. This works for me. I took 2 last night, but I still woke up a few times, but straight back to sleep. They work better for me than sleeping tablets and they are not addictive, worth a try.

Celtic, if I don't get any more flare ups before I get to 5mg, what would you suggest? 1/2mg every 4 weeks. The doctor prescribed the anti inflammatory and pred etc, but I am pleased to be off them.

Best regards

Buenavista

[Celtic PMRGCAuk volunteer in reply to Buenavista]

Buenavista

The 7.5mg dose you're on now is around the same amount of natural cortisol that our adrenal glands make when well but the artificial steroids suppress that natural production somewhat. Therefore when we start reducing below 7.5, those adrenals need plenty of time to start getting up to speed again with their natural production of cortisol in order to make up the shortfall as we reduce the Pred, hence the need to go more slowly.

Many people find difficulties around the 5mg mark and I had a major flare at that point necessitating an increase back to 10 on the advice of my rheumy. I fairly quickly got back down to 5mg but was then advised to remain there for some 5-6 months before continuing the reductions. I had read a report recommending waiting 3 months between each 1mg reduction below 5mg. I had also read of the experience of another sufferer who repeatedly had problems trying to reduce below 5mg. He then tried reducing on just a couple of days during one week followed by 3 days in the second week etc. I did it even more slowly, taking the new dose on just one day of the first week, two days of the second week, three days of the third week etc, taking about 7 weeks to reach the new dose every day. Everyone is different and some may be able to go faster than others - it's very much a case of seeing how you feel at each new dose but the longer you remain at each new dose, the more successful you are likely to be.

[Buenavista]

Hi Celtic,

Sounds like great advice, thank you. I will carry on reducing 1/2mg per month, to get me down to 5mg. Then 1/2mg every 2 months and see how I go.

At first I wanted to come off as soon as possible, like all of us, but as you say, the longer I remain on each new dose the better. And the new rheumy wanted me to stay on pred for another year anyway.

Thanks again.

Regards

Buenavista