Feeling worried and miserable!
Posted , 9 users are following.
Hello other members of this really interesting forum. I am very new to this having just joined and have only so far made one or two comments to other members. I was first diagnosed with PMR two and a half years ago. I was put on 20mg a day of prednisolone to reduce to 15mg a day after one month, then 10mg a day after another month and thereby reducing by one a month. At first the results were almost magical and I felt so much less pain within 24 hours of taking my first prednisolone dose. I followed my GPs instructions to the letter and a blood test showed that my ESR levels had reduced from 78 to 38. I was delighted. But the further I reduced the more the pain started to come back. And this has been the pattern over the last 2 and a half years. The minute I start reducing below about 15mg it all starts returning. The side effects of predisolone have also been a real worry. I have put on about 4stone in weight, my eyes are sore all the time, my teeth have been crumbling, I have constant hunger on the high doses and I feel generally miserable and worried. My GP referred me to a Rheumatologist about a year ago who was most offhand, said he thought I had Firbromyalgia rather than PMR and didn't need to see me again. My GP and myself did not agree with his diagnosis and still treated my illness as PMR. I have all the classic signs of PMR with intense pain in the groin area, hips, knees etc. Everything below the waist mainly. I haven't really suffered with pains in my arms and shoulders except for the first time I was diagnosed. I have just returned from a lovely holiday and a much needed rest and have been on 20mg a day all that time. But the steroids just don't seem to be working anymore. I am not able to walk very far and am in almost constant pain walking, trying to do the household chores, getting in and out of a car, in and out of bed etc. In fact almost everything causes me discomfort unless I am just sitting in my chair. I hate being like this as I have always been an active person, going 3 times a week to a gym etc. But I have been unable to do hardly any exercise since this horrible complaint first started. My latest blood test on return from my holiday showed that my ESR levels were still 68. This has prompted my GP to make an urgent referral to a different Rheumatologist to see if we can go deeper into this problem and find another reason why my ESR levels are so high and resistant to the steroids. I hate being on steroids, I think the side effects are horrendous and take over your life. Sorry for being so down about this but I would really appreciate other member's opinions and ideas of what I should/could do next. I almost forgot to mention that I am also on BP medication (my BP has risen) and have also been diagnosed with pre-diabetic!
0 likes, 12 replies
lodgerUK_NE maureen_87112
Posted
maureen_87112 lodgerUK_NE
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Anhaga maureen_87112
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maid_mariane maureen_87112
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So sorry to hear whats happening to you. Obviously your inflammation is not under control and never was. You may have tappered way to fast.
I'm sure Eileen will come and comment. From what I've read many times if this happens you may end up on a higher dose to control the inflammation then use the dead slow method of reduction.
Best of luck but your not alone.
Mariane
maureen_87112 maid_mariane
Posted
Hi mariane thank you so much for your reply. I suspect you are probably right that my pmr has never been properly controlled. It seems that my GP did give me the recognised treatment in the beginning and I responded very well at first. But 29 months down the road and I am no better and actually I feel worse. I'm still on 15mg but feel I might as well not be.
Anyway its nice to know i'm not alone although I wouldn't wish this awful thing on anyone!
Anhaga maureen_87112
Posted
Yes, unfortuantely it sounds like you now have the worst of both worlds - PMR plus pred side effects without pred benefits. Assuming your problems are all PMR and pred related I think the only effective thing to do would be to increase the dose to a level which controls the inflammation, wherever that may be, and stay there long enough for the inflammation to be truly damped down. Then taper lower using a very slow plan. By the way it's not usually effective to creep up to find a dose which works; better, apparently, to go up a significant amount. Standard recommendation is to increase one's dose by about 5 mg I think. If 20 mg, 5 mg over your current 15, has little to no effect after a few days, then that amount would need to be rethought. Thing is, a slow taper generally results in a lower total lifetime pred consumption, which is significant. So if you can get a handle on the inflammation, then taper slowly but successfully, that would ultimately be healthier than tapering too fast and getting into a yoyo situation. Diet and appropriate exercise, as well as getting enough rest, all help, too.
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
mark9992 maureen_87112
Posted
Hi Maureen, I don't have the answers, but maybe I can help with a few small pieces of the puzzle. I'll start by telling you that I too started at 20mg of pred. I felt suddenly great at first, but then I had severe fatigue and occasional fever. I went to an infectious diseas specialist and discovered that the pred had brought on a flare up of Epstien Barr...Mono. So...I had to completely come off of prednisone in order to allow my immune system to bounce back and put the mono in remission. It took me a month to ween, and another month of being totally off of it. During the second month I was so sore and stiff I could barely walk or get out of bed. I was in total misery. One thing that helped me get through it was Oxycodone. Here in the US many doctors are scared to death to prescribe an opium based drug because the DEA (drug enforcement agency) will start investigating you. I ended up having to go to a pain specialist and sign a pain medication contract. I got some oxy. Oxy doesn't fix it, but it does make it a bit easier to live with. So I suggest a pain killer like that.
Now I'm back on pred, and I was started back at 10mg, which leaves me with a little weakness and soreness, but I'm up and around and can live my life within limits.
Now about pre diabetes. I have it too. I was measuring just under or over 100mg/dl on a fasting test before all this happened, which if you can't convert from mmol just means I was pre diabetic, but my GP didn't seem very concerned...nor was I. My diet was awful...donuts, candy, crisps, you name it. So...when I went on pred, it should be no surprise that my sugar when through the roof! My rheumatologist didn't seem to be too interested in my sugar either. However, I woke up and DID get interested. I researched diabetes, and diets, and modified my diet such that now on 10mg of pred, I actually have lower sugar than before, and in the normal range, albeit at the higher normal range. No more junk food, vegetarian diet with lots of beans, veggies, and fewer grains. I also treadmill 20 mins after each meal to burn off excess sugar, and of course its good for me.
I believe my sugar would be okay without the exercise, but its better with. I hope some of my experiences are useful.
mark
maureen_87112 mark9992
Posted
Thank you mark for your very interesting reply.
I also have to make some big changes to my diet! I find the hunger pangs you feel on the higher doses of prednisone awful. And it makes me eat too many carbs.
I have been given painkillers also called dyhydracodeine. But I treat them with caution as they are an opiate and also addictive. They also have nasty side effects and I don't want to develop an addiction to them and all the problems that would present.
I will keep you informed of how I get on when I get an appointment with the rheumatologist.
Anhaga maureen_87112
Posted
I've found eating foods higher in fat (like eggs, avocadoes, nuts, salads with olive oil generously applied) helps control craving for refined carbs and sugars, which have now become a minute part of my diet. I put on about four pounds which I've since lost, rather unfortunately as I started my PMR journey with a catastrophic loss of weight! But I developed high blood sugar when at a higher dose of pred so am now completely out of the habit of eating many carbs.
tpaggs maureen_87112
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It seems a little unusual that you are not getting relief when you are on a high dosage of prednisone. Most of us, from what I've read, felt so much better when starting on this dosage. You may have something more going on here. Perhaps you should seek out a new Rheumatologist. You shouldn't have to suffer this way.
maid_mariane tpaggs
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I didn't get total relief at 15mg. Within rhe week was uped to 20mg and within 3 weeks was splitting the dose to control the pain.
Even the time if the afternoon dose took months to refine. My best time is 3pm for afternoon dose 5mg.
From what I've read many times if you haven't got the inflammation under control it may take more than the original dose to do it so 20 mg does not shock me or more considering the length of time.
susan29426 maureen_87112
Posted
So sorry, Maureen, that you are having such a rough time. And, I totally relate. I was on 20 mg for over a year, don't think I should have been, didn't know about the dead slow taper then, so followed MDs advice to drop 2.5 mg every two weeks. Nothing but pain! I complained that I couldn't comb my hair, or pet my cat and could barely get dressed. A new doctor put me on 40 mg (short term) which took the pain away, but shortly thereafter I was in the hospital, so don't recommend this. She thought it would blow out the inflammation, but from my experience and other contributions to this board, I think that was based on a false premise (that prednisone cures PMR). So, I would agree with other posters that you may need to up the dose, then taper down slowwwwly. I've been put on a vegan, gluten-free, sugar-free diet - never thouight I would be THAT person, but I'm motivated because I'm starting to feel better.