How do YOU forum members make your decisions re pr | Arthritis Information

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Can I get a little feedback here, please? Until I tuned into this forum I was counting on PMR being over by the time a year had passed, so I've been holding myself to 5mg pred figuring I'd rather tough it out than experience more of the side-effects. Silly me. I know I would feel better on 10mg but the other side of that is that I fear I risk more problems with glaucoma than I already have. (I was diagnosed about 6 months into the PMR). I have to be on Glipizide to control blood sugars as the pred makes me a situational diabetic, elevates blood sugar and puts me in a position where my vision fluctuates so much I can't get a pair of glasses that works for more than 3 weeks. It is also a problem controlling optic nerve pressures. So far I've had a laser procedure on one eye (they do them one at a time) to see if the pressure can be better controlled that way because the drops I use 3x/day make my eyes very uncomfortable. The other side effects, ie the bruising, additional bone loss and whatever else I'm forgetting seem to me to be much more manageable that the eye problems. There it is in a nutshell. So I'm trying to decideā€”go for "creature comfort" at a potential high cost, or continue to tough it out at 5mg? Hoe do the rest of you weigh these decisions?

Cathieo

The 64 dollar question?

I cannot answer for anyone else but me.   I have GCA and do not have PMR.

I do take Prednisolone because it has been around since 1949 and all the side effects are well listed and even though they are listed, there are others that are not listed.  Whether this is because people do not make enough noise or not, I just do not know.

However, there is another drug that is used when people either cannot take Prednisolone or the Consultant Rheumatologist in conjunction with the Patient decides to use Methotextrate in conjunction with a decreasing use of Pred.   However this drug also has side effects and the patient needs to weigh it in the balance.  

There is also a drug called LDN (Google it) and a person with PMR is currently trying this out
and there has been a discussion about this drug on this patients forum website.
http://www.arthritis.ca/open%20forum/boards/polymyalgia/default.asp?s=1

You will have to scroll down and look for LDN in the headings on the discussion forum on PMR.

Finally, a bit of bad news  - there is no known cause or cure for either pmr or gca.

PMR goes away  - but when IT wants to.  

Yes,  I know they say it burns out within 2-3 years.   They should read these forums and visit support group members, who will tell them in words of one syllable  - it don't  - it can go away within the 2-3 years, but this appears to be the case mainly for men.  Women can take literally years.

GCA is more problematic and some people are on a low dose for the rest of their lives.

So back to the original question.    You make your own decision  - its your life, your body - nobody can make if for you.   You gather all the advice  you can, listen, chew it over, sweat it out and then decide.

Good Luck and in the words of Dave Allen 'May Your Gods Go With You.'

mrs UK.



Thanks so much for your thoughtful reply. I guess I just have to adjust my thinking now that I know PMR can go on much longer than a year. I may find I don't want to settle for the partial relief I get with 5 mg pred for years, but I don't want my eye problems to get worse if I go back to higher dosages. Thanks again.Agree heartily with Mrs UK.  Only you know where your comfort levels lie. I can take some pain provided it is manageable enough to enable me to live 'normally' and by that I mean under reasonable control with painkillers or alternative remedies, but if that situation gets out of hand and the pain is taking over, then I'd have to up the Pred. Equally, if the situation is known to be a temporary one I might decided to ride it out until the situation itself resolves if it is possible.

Currently here in the UK it is warm which I find quite helpful, but a few degrees more into hot weather and I'm going to be in trouble again - I find hot weather just as tricky (if not trickier than) cold weather but I know if I have to increase the Pred for that reason various side effects (e.g excessive sweating, additional back pain) will also increase, and the side effects often equal the pain for me.  When we had very high temperatures here a couple of years ago I thought I wouldn't live to see the Autumn but once the weather cooled I was back to 'normal' within a few days.
It's a case of the devil and the deep blue sea quite often with Pred!  Each one of us reacts differently to any given situation, to the drug and to PMR so I find it's often a case of judge-it-myself, leaving aside any information given by any tests.  The one time when I really don't have a choice in the matter is when a flare-up occurs, but I should think that applies to everyone.
I hope this helps, good luck and best wishes and if I could find the person who insists that PMR lasts only 2-3 years I'd give him a piece of my mind. Grrrrrr!
 
Thanks for your comments. I've learned more about PMR in the past week than I have in the last year+.
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