Issues with Tapering - Please help

Sounds like we are in very similar predicaments.

Have you been getting enough rest, as well as enough appropriate exercise hopefully in the fresh air?  You should coddle yourself so your body has a better chance to heal.  I know that's sometimes hard to manage, but if you had broken a bone no one would be expecting you to perform as usual, would they?  This disease is invisible, but in the need to take time for healing it's no different.  ??

You have to come to terms with the idea of side effects - what do you mean by possible pred-related side effects? And not taking enough pred to manage the problem isn't virtuous - you are getting all the downsides with no benefit to balance it out.

I had PMR for 5 years without pred, I had 2 years on pred with next to no side-effects other than the weight redistributed itself to the typical pred places. Then I had 9 months on a different corticosteroid that brought with it a load of very unpleasant side effects - muscle atrophy, weight gain, my hair went haywire in every sense of the word and I grew a dark beard. Switching to yet another form of pred led to them reversing luckily - I managed to lose 36lbs in weight. But at no point in that 9 months did I feel the PMR was better than the side effects - even though I needed 20mg taken at night to get any pain relief. 

During the 5 years I wasn't on pred I put on weight - I couldn't exercise. I was immobile because of the pain and stiffness - a major risk factor for osteoporosis. Together they were a risk factor for diabetes. I was depressed and cut off from my friends. There are risks associated with unmanaged PMR too - it isn't black and white.

Having struggled myelf on and off 4 years now, (10.5mg) would you mind explaining the difference between the choices of pred?  I have the side effects you describe with the first lot of pred you were on, but at no time has my doctor or rheumie offered me a different one, could it be the cost!.......I am on prednisilone..

Thank you....

hi scotth   i am on my 5 year pred trip.  and i have to say about the side affects.   i never had any  really that i can rememeber.   so i hope this helps. i did have side effects on alundronic. so doc changed that to calceos.which has been ok,    from 20 to 2  mg over 5 years wth 1 flare.but now i am down to 2 mg i am  very slowly reducing.  as at 2 mg.i think i am safe from  bone  probs   fingers x

To some extent it depends on the country - in the UK they use prednisolone, either plain white tablets or enteric coated pills. Here in Italy they only use Medrol, methyl prednisolone, there is no prednisolone to be obtained whatever you do. In the USA they use prednisone and Medrol. If you have injections they are always Medrol.

As I say, I was pretty much OK on prednisolone in the UK so there was no real reason to wonder about a switch. The oral Medrol just didn't work for me and I was pretty ill - so my GP suggested trying Lodotra (Rayos in the USA) which is a coated, timed release version of prednisone. I was able to reduce dose immediately and reduced steadily. I got down to 5mg for about 18 months or more but had a flare in January and went back to 15mg. I'm now back down to 10mg. I'm noticing hair changes (and my nails are better again!) but nothing else I'm aware of.

In the case of Lodotra though it WOULD be cost. It costs about £25 for 30 tablets, of whatever dose. You need up to 3 tablets to make up a dose (it comes in 5,2 and 1mg pills) so the cost is up to £75 per month compared to about £3 maximum for plain white pred. So the NHS doesn't allow it although you CAN get it on private prescription if you can afford it! It's actually only approved for use in RA and it was being used for it - but an edict was issued telling doctors not to continue using it.

You can help some of the side effects though - you can avoid weight gain or keep it in bounds by cutting carbs. You have to be very disciplined but it is usually possible to lose or at least maintain weight on any sort of pred. 

Thank you for that Eileen, I have actually gained about 9 pounds altogether since starting on pred 4 years ago. (I am 11stone, only 5ft 3in) I cut out 90% carbs expecially bread, I don`t feel good after eating it anyway.  Funnily enough, I have lost 7 pounds of it....but annoyingly none from where I have gained pred weight!  Face, back of neck, tummy, (this gives me more back problems etc.)...I am not all that mobile because of having fibro as well, even if it`s just to walk round garden, I try to keep moving if possible.....if not it`s down to diet...such a struggle....

Funny isn't it - when I lost the weight it went first from my midriff - I got my waist back, then the face slimmed down and the hump has gone! I wonder why it is so different? 

I could do with losing a load more - just over 11 st at present and I'm a mere 5'1"  - but I got stuck, even slipped upwards a bit. I think I am about back where I was before pred but after 5 years of relative inactivity with PMR when I did put on weight.

But I'd have to give up wine and as that is my only treat ...

Oh, don't give up the wine. We need some comfort and as we get older I read somewhere that it is better to carry some extra weight.????

My feelings exactly - though a little bit extra wouldn't come amiss!

I have been pondering your 1st paragraph all morning. I will go back up to 11mg.

?My new 'health problems' started 6 months ago and are getting worse. Dr thought problems may be side effects. Pain down throat (only right side). Endless bloating which is causing more pain than the PMR. I  had Hiatus Hernia op 5 years ago, so the pressure at that point causes pain along the nerve paths up into the shoulder and neck, This pain has overtaken the PMR pain. As others have also mentioned I now have severe pain in lower back area which I am sure is bowel related. I am not getting much relief from these new pains.I am having tests which have not found a reason yet. Diet, probiotics and prescription drugs have eased the problems occassionally, but they come back with a vengeance.

?I didn't realise that there are different corticosteroids.Ii do have muscle atropy, a little weight gain, hair stands on end (the little that is left), but no dark beard ?.  What a picture we paint. My mind boggles.

?I have often wondered if I have an underlying infection which flares up too, or is it part of pred ? I will put on a new post about it.

Are you on a PPI? They can cause quite awful bowel problems and it doesn't always start immediately after you start taking them. Omeprazole is said to be particularly bad. There are other, older, options which work almsot as well - the difference is not as good as the PPI manufacturers make out.