Breaking the Pred Rules!: I had tapered 4 weekly... - PMRGCAuk

PMRGCAuk

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Breaking the Pred Rules!

Bignorhill profile image
7 Replies

I had tapered 4 weekly down to 3mg but was suffering a lot of pain. The Rheumatology Advice Line suggested going back to 5mg but after 2 days of 5mg I went to 10mg for 2 days, this seemed to kick out the bad pain. I then reduced to 9mg for 2 days and then 5mg for 2 days and now back to 3mg. I feel a lot better and did not want to go through months of tapering again.

I plan to go to 2mg on Monday then 1mg after another 4 weeks and then to zero after that.

I personlly believe that staying on the steroids will kill my bodies ability to produce its own hormones to combat inflammation.

If there is pain I will just have to work out how to manage on occasional pain killers other than steroids.

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Bignorhill profile image
Bignorhill
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PMRpro profile image
PMRproAmbassador

Sorry - I'm confused: breaking what pred rules?

That is exactly what many of us and several rheumatologists of our acquaintance would have suggested although you added a bit more: whatever dose the flare symptoms appear, you add 5mg for 3-5 days. Up to 7-10 days you could drop back to the previous dose immediately without problems although we usually point out that if dose xmg wasn't enough before, why should it be now and going to x+1mg makes more sense. Some people drop back in steps as you have done, it doesn't make any difference.

Your plan for the rest of the reduction is fair enough - but if you were having a flare, do you not think it is possible that you have got to the dose that you are looking for already? The disire to get to zero is natural - but if the underlying cause of the symptoms we call PMR is still active all that will happen is that your pain will return. Of course, unless you try it you can't know but I wouldn't be so sure in planning the times.

As for "I personlly believe that staying on the steroids will kill my bodies ability to produce its own hormones to combat inflammation." The inflammation is because cytokines in your body fulfill various roles and some create inflammation deliberately because inflammation is part of the healing process. In autoimmune disease the immune system has gone wrong and doesn't recognise your body as self so it attacks body tissues in error, the cytokines are not doing what they should. It isn't just the hormones involved in modulating the inflammatory response - the system has broken down. But it was broken before you went on pred.

And as someone who lived for a long time with PMR without pred - if the pain is due to PMR, then painkillers won't help much. They might help other pains - but PMR isn't amongst them.

GerriMc profile image
GerriMc

I’d agree with PMR Pro, I resisted taking steroids for a while and I found that taking OTC painkillers worked for a very short while on the actual pain. What they didn’t do was tackle the crippling stiffness. Also they became less effective at controlling the pain quite quickly. I found I needed large doses to have any effect. That’s much worse for the body than taking steroids.

Also, I’m now tapering from 2mgs to 1.5. I can’t believe how significant half a milligram is. I’d take it a slowly as possible if I were you.

Yellowbluebell profile image
Yellowbluebell

I for one like pmrpro went some years before pmr was diagnosed and pred prescribed and there is no way in hell i would go back to my pre pred pain. My main aim in life is to survive it as enjoyably as i can which i cant do whilst in pain so pred is literally giving me back my life albeit an adjusted one. Why suffer pain if you dont need to?

Orpheus82 profile image
Orpheus82

Going without steroids?! Watch your eyesight carefully. You really don’t want GCA. The main reason I carry on with steroids is that I have seen firsthand the devastation from the permanent loss of vision from GCA. So if you do go without steroids and notice any change in vision you should hot foot it to A&E or your eye clinic if they have a walk in casualty.

tangocharlie profile image
tangocharlie

Have you thought about asking for Depo-Medrol steroid injections? They last about 2-3 months and have done wonders for me. Work much better than low doses of the oral prednisolone and without side-effects like weight gain and insomnia.

Bignorhill profile image
Bignorhill in reply to tangocharlie

Never been offered other than injections in the shoulder. I have not suffered the side effects you mention, I have in fact lost 16 pounds in weight and am not suffering insomnia.

tangocharlie profile image
tangocharlie in reply to Bignorhill

That's great you didn't get the side effects that many of us got. The depo-medrol injections I mentioned are an alternative to low doses of Pred and not the same kind of steroid used in joint injections. I came off pred but still had problems and flares and fatigue, so keeping on the equivalent of a low dose of steroids by way of the regular injections helps me until the inflammation hopefully one day runs its course. I was surprised that even a low dose of say 1-2 mg of Pred makes a big difference. All the best

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