Hello again. 69 year old bloke previously fit and very active, began with PMR 2½ years ago when I suddenly could hardly get out of bed, etc. I had a nasty chest infection as well at the time. Persuaded sceptical GP (“you must expect some aches and pains at your age”) to start me on 15mg Prednisolone. I also have serious Glaucoma, already lost half sight in one eye, 3rd surgery coming up, so constantly worried about eye pressures. Carried on exercising as before for the first year, but didn’t realise I was damaging my shoulder, and a fall in the shower resulted in a Massive Rotator Cuff Tear which leaves me with a permanently half-useful shoulder. (Warning to everyone on steroids still exercising, ligaments are softened!) Slowly reduced successfully to 5mg Pred over 20 months but step to 4.5 mg sent me almost back to where I started.
Thanks to help from this wonderful forum I have since experimented and settled on 4.5mg at night and 4.5mg in the morning, it’s the best regime I have found so far but this is only just keeping me going, most of my pain and stiffness is in my hips and legs and mostly I can only walk very slowly and not far. But at least now I usually sleep OK (in between trips to the loo!) Sometimes a few hours after the Pred I feel as if something drains out of my legs and I can walk almost normally – but it doesn’t last the day. Does this sound familiar to anyone? Previously keen travellers, we can’t even go on a holiday we’d like.
I have just had bloods done, ESR is 13, (high normal) CRP is 52 (normal quoted as up to 10). So I’m at least officially inflamed! The only other abnormal reading is HbA1c at 43, which calls me pre-diabetic (over 42) and I am called for “intensive lifestyle advice” by the Practice Nurse. That should be a laugh – Take More Exercise, (I wish) Drink Less Sugary Drinks, (I don’t) Lose Weight, (I’ve already lost half a stone, never put any weight on, muscles disappearing fast). Eat more greens (we grow them, already eat loads). Is this normal at 9mg Pred?
A nice dilemma: risk GCA by not enough steroids? Or risk Glaucoma getting worse because of more steroids? Any offers? Rheumatologist typically not very interested, GP knows less than I do now.
Sorry about the moan, it’s usually only the wife that gets it. And she’s fed up.
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Roltuba
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Hi as you have frequent trips to the loo have you asked your doc for a PSA test ? Sorry I can't comment on anything else as I'm new and still have a lot to learn but I've read a lot about Prostate probs since my husband was diagnosed with an enlarged prostate . Good luck Roltuba
PMR Pro and others will likely have more informed advice than mine, but my vote would be to stay the course with the prednisone, especially since your CRP is high. Can't do much to heal the PMR and you don't want that to flare up to an even worse state. Unlike the PMR, I suspect they can treat/heal the glaucoma, so long as you are keeping up with that too? glaucomafoundation.org/trea...
BTW, I can very much relate to the "ligaments are softened" statement! I kept exercising as normal as well...big mistake. Kept injuring myself and was very frustrated! Much more forgiving of myself now and keeping up with the gentle exercise, but I still have "water on the knee" in both knees. Best to you!
You are on the horns of a dilemma! I wish that you had a wise,interested Rheumatologist to guide you. Your dose of Prednisalone is clearly not high enough, maybe it never has been, so you are experiencing all the downside of steroids and next to none of the real benefit. Then you have the worry of Glaucoma that can exacerbated by the use of Prednisalone. Have you seen an eye specialist? If not I would certainly ask for a referral to discuss the specifics of your difficulty. It would be good if you could get the GCA inflammation completely under control whilst your Glaucoma was being closely and regularly monitored.
You sound like a very positive person I hope this resolves for you in a good way. You really can be much more mobile and pain free than you are.
Constantly under Ophthalmology surgeon for years. Trabeculectomy in bad eye a year ago, re-stitched in Jan to try and improve Symptomatic Extended Bleb, that didn't work, so scheduled to have a "gathering stitch" in conjunctiva next month to help big "blister". Nobody can answer the question of how much pred will increase eye pressures. "Good" eye is only just under control with 3 sets of eyedrops, routine takes half an hour morning and evening. Bad eye has lost top half of vision. Glaucoma is NOT something that is easily sorted. Thankfully I haven't got GCA - yet.
There is no answer - because everyone is different. Pred does not ALWAYS raise pressures so it is a case of try the right dose and see if it raises pressures. YOu are probably at more risk but I don't really know.
Would hazard a guess that "loo" trips are down to the diabetes-albeit pre at moment and maybe prostate - could just be enlarged - my late hubby had that for years, never became anything more sinister, so might be best to get it checked. Just another thing to throw in the mix!
I think you'll be giving more advice on the "lifestyle advice" than taking it!
I appreciate your concerns about eyes - only too well - but glaucoma is manageable so keep taking the tablets! Or whatever is necessary.
As someone said the older day, old age and illness are not for sissies!
Thanks for making me smile! Actually re Glaucoma I'm awaiting my 3rd bout of surgery on my right eye for a troublesome bleb following my trabeculectomy this time last year. I will try and behave when I meet the nurse! I did have a prostate check maybe 3 years ago now so that could be worth a another go. I think Sir David Attenborough has also used some colourful language about the non joys of getting older!
Cut carbs in general drastically - pred makes your liver produce spikes of glucose randomly - and if you also eat a lot of carbs of any sort that can be enough to take you to an Hba1c level that is hovering around the pre-diabetes. Does equal sized doses work better than 2/3 and 1/3? How early in the morning are you taking the morning dose?
Thanks for your thoughts. I have tried the other proportions and have found that I get a better start in the morning with the equal dose. I experimented with a 7.30am and midnight reqime but have found that sticking to a 12 hour rota at 9.00am and 9pm seems to suit better. I do get very stiff in the early hours (predictably) but the better result in the morning is worth it. Regarding carbs I think I'm about as low as I can go without going bonkers! I've lost half a stone (was 11st 10 @ 5'9") mainly from my legs in the last 6 months, which must be muscle. My wife says the love handles have gone too!!!My liver scores were on the low side of normal. Considering I'm operating at no more than half my energy output of a year or so ago this is all a bit surprising. Virtually no sugar, lots of fruit and loads of home grown veg (including some new potatoes) , very lean meat (ocassionally) and fish both tinned and fresh. A chip is a 6 monthly treat.
I've been keeping a log to see if I can detect any patterns and the only one that seems to come up is that if I "over do" things on a "good" day I pay for it the next - but this is by no means consistent. Overdoing it can be as simple as spending too much time in an awkward position weeding or going on an easy 3 mile walk with a crowd of friends in their mid 70's.
Um - that's what we keep saying - you feel well, you do too much and the next day is payback. So you rest for a couple of days to recover - and you feel well again.
It is all about pacing. Knowing your limits and sticking to them. But you have to be consistent and resolute about it.
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