Prescribed Lansoprazole , calcium and vitamin D tabs and prednisolone. All still in the packets. The list of side effects from steroid use terrifies me having read many online comments about them. Also treated my dog with them for last three months and have seen what's happened to her so would welcome some insight into likely side effects.Also concerned of risk of GCA if I don't start treatment . Currently the pain is debilitating at times but I could live with it . Question is will it inevitably get worse without steroids or are there degrees of PMR. Will putting off taking steroids mean condition will worsen and therefore be even more difficult to control .
Hello joan83529
Don't panic or despair - just cos these side effects exist doesn't mean you will get any or 'all' of them - the real 'experts' on this forum will explain that very well soon i am sure. I can't tell you what a relief it's been for me since the beginning of this year when I first got a PMR diagnosis to NOT be 'stiff' and in pain. After awhile with all that it becomes harder to recall what being able to move freely and comfortably feels like. I had that for about a year - getting slowly worse before I got almost complete relief after 4 hours of my first dose of Pred. I only took one other prescription drug prior to that - Lansoprazole for a long term reflux problem (all my siblings have the same) and after more than a decade on that I have had no associated side effects that I am aware of. Good though when taking Pred to always 'line' your stomach regardless of a PPI - Greek yoghurt works very well for that and is nutritious and low in carbs - the very best 'way' of eating to control possible weight gain which many also think (wrongly) is 'inevitable'. I have in fact lost 10kgs since I started taking steroids three months ago.
You will get lots of moral and other forms of really informative suggestions and support on this forum - and things can work out lots 'better' than you think at first.
Good wishes with everything
Rimmy
Hi Joan. I hope this helps but I have had PMR now for 3 years which is a relatively short time compared to some. Believe it or not the preds are a lifesaver when it comes to pain relief and for me that far outweighs the side effects I suffer. Preds control the pain not the condition and only time will allow the PMR to burn itself out. At the end of the day it is your decision as to whether you take preds or not but I would rather be pain free. Good luck.
Hello Joan, I too was afraid of starting Pred after reading the details. However, at the time of my appointment with the doc, she said that until she saw the blood work results (about 3 days) I was to take the Pred because if I did have the Temporal Artitus then It could cause blindness!!! So I started with my first 20mg Pred and it was like a miracle pill, within three hours the pains of three weeks in legs and arms, had melted away. I had loads of energy and felt more like my old self. Three days later the nurse called to say stop taking the Pred as I didn't have this awful thing! But I said then what have I got?? I had to see the doc, one week later I saw the doc. She thought I had PMR but wanted me to see the Rheumy as they could do further testing. By the time I knew I had PMR I was still on 20 mg. but feeling jittery and slightly queasy. I started to taper off as siuggested by my Rheumy 1 mg at a time. So in summary I would say try the Pred. I'm told if you only take it for a short time you can stop it suddenly, but I'm not a medical personnel so don't go by my comments. The Pred certainly gives me a pain free life and I'm very thankful for it, as the pain is so miserable and debilitating. Good luck and I hope this helps you in your decision. BTW I'm down to 8 mg!
I'm sorry to read that you have PMR but this is a very supportive forum so ask all the questions you want and someone will help. There are some experts who have lots to offer. Eileen will give you lots of information. I felt the same as you when I looked at the side effects. I eventually decided to take them and have had some side effects but they are far outweighed by the fact that life has almost returned to normality.....whatever that is. I am 2 years down the line and on 4mgs. I wish I had realised at the beginning that if I had followed a low carb diet I would not have put on so much weight. That's one piece of advice I'd like to have known. The other one is not rushing around trying to do everything at the same pace as I did prior to PMR. I soon learnt to pace myself. When I took the steroids I felt so much better but it's important to carry out a task, rest, then do another one but at a slower pace. Resting in between is so important as the steroids do not cure but help ease the symptoms. The inflammation is still there and your body will let you know. It is your decision to take the steroids but it will make life tolerable if you do. Best wishes.
There are no answers to most of your questions - everyone is different in how they react to pred and it isn't until you start you find out which side effects you will develop. There are 82+ listed side effects of pred - no-one gets them all, many of us have next to none! I had side effects with one sort and gained a lot of weight - but i have lost it all. I had gained a lot of weight because of PMR anyway as I had had it for 5 years before it was diagnosed and the immobility and comfort eating for the pain and depression had led to weight gain as I couldn't exercise to keep it off.
Now I would say I have no side effects to complain about - I don't bruise, despite also being on anticoagulant medication, my hair is back to normal, I gained weight and have lost it all again, I'm not in pain and can move. My bone density is nearly unchanged since starting pred nearly 8 years ago even though all I have taken is calcium and vit D. I have raised BP but for another reason. I cut carbs drastically to lose weight - and there are no signs of even pre-diabetes problems. I did have one very bad 9 months or so - but even then, it didn't occur to me to stop the pred.
Try your pred and see how much difference it makes. And ask your GP for a dexascan as soon as possible so you have a baseline for bone density. I would also suggest not taking the lansopraole at first - if you get any side effects from that you won't know if it is the pred or that. Lots of us never took any or used ranitidine/Zantac which has different side effects - like everything else, everyone is different...
I lived with the pain for about 3 months before diagnosis and pred. I had little choice than to remain active and keep going (long story).
I have no doubt I could have continued longer, but realistically the pain was inexorably wearing me down.
At its worst the pred messed with my mood and concentration. Brain fog.
Between the rock and the hard place I chose the pred. Somehow it seemed better to feel positive about progress rather than negative.
I'm very independent. But I needed help.
I doubt I would be doing the things I am now doing (after three years, down to 3mg/day, and on a fairly arduous 3 month desert trip) without the pred.
I have had PMR for almost two years. My only noticeable side effect was heartburn, which I controlled by putting the pills in capsules. Good luck with your journey.
The thing about pred is that unlike many drugs which have serious side effects you are NOT at your initial highest dose for very long. Once your symptoms have been reliably relieved for about six weeks you start a slow and careful, steady reduction to the lowest dose which continues to relieve the symptoms. This can take a while to achieve maybe over tswo years, but with every reduction the side effects, if any, also reduce. And virtually all side effects can be managed through diet and adequate rest. It is a challenge. I understand completely how you feel about pred. But pred can be your friend, albeit and dangerous little friend who has to be managed! All the best.
Hi Joan, you can always try taking the steroids for two or three days and see how you feel. Then stop if you feel they are not helping. They really are a wonder drug. Nothing else touches them in reducing inflammation. I have coated tablets, if you live in UK you can get them on the NHS, this means you do not need Lansoprazole. Have you been tested for vit D deficiency the symptoms are quite similar to PMR?
Hello Anniecurd. What sort of capsules do you use ? Are they the clear ones you can buy from Amazon? I need to put the little white pills in something as I have badly burning stomach. Thank you
dont be scared joan i never had any side efects from pred. the only side i got was from aldronic acid. so the doc took me off and put me on calceos no probs with that either.there is nothing that will touch the pain only. pred. rather take that than be in excrushiatin pain of pmr. i have been on it for 5+years and had a dexa scanlately and bones are ok too cheer up things can only get better x
I purchased enteric coated capsules from EBay. I think I got 1000 for about $10. They work great, before I used them my heartburn was so bad that my rheum sent me to a heart specialist.
Thank you for that. I will see if I can get some. Best wishes
I won't repeat what the others have said. I just have to ask how you can be in debilitating pain and yet still be willing to live with it.
PS forgot to mention. I was a bit concerned about long term effects of untreated pmr. I don't know the effect of permanent inflammation.
In the case of vasculitis (inflamed blood vessels) it predisposes the body to cardiovascular diseases and peripheral vascular disease. Generally unmanaged inflammation also predisposes you to developing certain cancers. Depending on the organs involved it may cause other problems.
Thanks Rimmy. After going round in circles I finally decided to take the medication because the symptoms have gradually worsened over the last couple over last couple of months if I'm honest and I'm committed to providing child care for my baby granddaughter from Sep when my daughter resumes work ,only three half days and collecting the little boy from school but I need to be fit enough to do it . I'm determined not to put on weight so you've given me hope in that respect and am just hoping to avoid some of the other unpleasant side effects. Who knows , maybe tomorrow I'll be able to pull my jeans up without pain shooting up my arm .
Thanks again for replying
Joan
Hi Tavidu, thanks for your response. Started preds yesterday , decided it was the lesser of the two evils but only time will tell
Hi Freda , thanks for your reply. I started preds yesterday encouraged by positive but realistic comments on this website. I'm going to see how it goes.