I was diagnosed with PMR Jan 2015. I started on 20mg since my ESR was 98 and my pain severe. I immediately gained weight, esp with increased appetite (although was very careful about diet). Than noticed hair loss. I am currently on 10mg. Am trying to decide if my extreme fatigue is due to Pred or PMR or both. Seems like taking a shower is a huge chore. Trying to live with a bit of pain thinking that the Pred side effects are not good either. I now have increased inner ocular pressure from the Pred too, which causes blurry vision. My question is at what point in my reduction might in I see some weight decrease, hair loss stop and energy return when decreasing the med? I have noticed that my appetite has returned to my normal low. But even eating a min of calories I can't drop a pound. Seems I've rambled on. Is everyone so terribly fatigued? I push myself but can only go so far.
Is there a point in Pred reduction when I could s... - PMRGCAuk
Is there a point in Pred reduction when I could see less hair loss and less weight gain?
I think my fatigue has increased at the lower levels of pred, probably because the adrenal glands are having to leap into action again. Fatigue is part of the PMR condition. I did not really get much hair loss, although a little, my hairdresser says it seems to be better now at 8mg. A friend who took Methotrexate with her pred had her hair coming out in handfuls. She is on 2mg and was complaining about terrible fatigue this week when we had lunch together. At diagnosis I did give up gluten and simple carbs with the occassional slip and that seems to have helped with weight gain. I eat much less than before to maintain my current weight. I am not quite so ravenous as I used to be, when I felt I could eat a five course meal every hour. Losing weight with pred is more difficult sadly, but some people have managed it. The 5/2 diet seems quite a succesful method.
I started this time last year on 60mg for GCA and at that time had already lost a lot of hair, due to the GCA. I am now down to 6mg, and my hair has at last thickened again, albeit coming through grey instead of brown! After my last haircut the floor looked as though someone had shaved a badger. At least now I don't have to carefully arrange my coiffure to diguise a hole at the back.
Hi Alison,
Lots of people have fatigue, some due to Pred, some to the illness itself, difficult to tell. I'm on 3mg, down from 80mg over three and half years and still get tired, not extreme fatigue like before diagnosis. And as piglette says, probably due to adrenal not kicking in properly. So think it's just something we all have to manage in our own way.
As for hair, some loss may be due to Pred, some to the fact you are ill. My mum, who was a hairdresser always said she could tell if a client had been ill over the previous year by the state of their hair. You may get better, but your hair takes longer to recover. Mine was very bad, thin in volume and number before starting Pred, after 18 months being undiagnosed and I had it short, too painful on arms, shoulders to cope with it, but now it's getting back to as it was when I was younger - apart from the grey streaks, but you can always do something about them! If you want to, of course, grey is now the in thing - apparently!
I guess one just can't predict when bits of a regular life may start to return with reduction of meds. Thanks each of you for sharing your experiences on this frustrating journey. I have noticed others say how the pmr affects their hips. I finally got a cane but still with the imbalance find myself walking kind of flat footed like a duck. Sound familiar? 😐
The whole idea of pred in the management of PMR is to manage the inflammation that is the cause of the pain and stiffness. There is no cure for PMR - PMR is actually just the name of a set of symptoms, the cause is an underlying autoimmune disorder that leads to the immune system not recognising your body as self and attacking it as if it were an invading virus. This causes damage to tissues and inflammation. Luckily, pred will allow you to reduce that inflammation greatly and, hence, also the pain. However - you have to take enough pred to do that. Leaving uncontrolled inflammation is also not good for you - it can be the root cause of cardiovascular disease and even some cancers.
That means that really you have to decide which is worse: the pain and longterm effects of unmanaged PMR or the side effects of pred. If you don't take a high enough dose to manage the pain optimally you have to sit down and ask yourself whether it is worth taking any at all since you aren't getting any benefit to outweigh the adverse effects.
I've had PMR for over 10 years. For the first 5 I did it alone, no-one could diagnose what was wrong: I was too young at 51 for this "old person's disease" and my blood markers were normal. Otherwise I had textbook symptoms. I never had a day without pain, I went to the gym for an aqua aerobics class in a warm pool that got me moving. The steam room was bliss! But I worked freelance from home, I could arrange my day to do that. I couldn't have worked - I couldn't have got out of bed, get dressed in work clothes and use public transport to get to a job for 9am. It suddenly got much worse and eventually I worked out what it probably was, a grudging rheumy didn't agree but gave me 6 weeks of pred to cover a trip to the USA. Six hours after taking the first 15mg I could walk down and back up the stairs - I didn't have to stomp down like a toddler and crawl back on my hands and knees. He wouldn't listen - but a different GP to usual in the practice did.
Just over 3 years ago, after moving to Italy, I was switched to Medrol from the standard UK prednisolone. It was awful. My hair went wild, fell out and didn't grow. I gained a LOT of weight and was on crutches because of a drug interaction between an antibiotic and the Medrol which caused achilles tendon problems. The Medrol didn't work anything like as well as the pred had done. But even during all that - I didn't consider any of it was worse than what I knew was on the menu if I stopped taking the steroids: constant pain and immobility. My GP here suggested another, very expensive, version of prednisone. It worked much better and I have lost about 36lbs in weight while still taking pred, my hair has grown back and is no longer frizzy or even curly - it's normal for me. The weight loss is as much from cutting carbs drastically - if I eat more than a small amount of carb a day I don't lose weight. Diet can make a big difference as the others have said. The PMR is still there - but a low dose is now managing it.
When and how you will lose weight, your hair will get back to normal and so on can't be forecast. Some people have to stop pred altogether. But it will happen eventually.
Thanks PMRpro. Is a good reminder that pain control is more important than trying to get away from the side effects of the pred. My rheumatologist seems to push me to reduce faster but I think I'll rely on my body to tell me when and how much to reduce.
Hello PMRPRO...I was just going through some old posts and reread the one above in which you mentioned another expensive version of prednisone that worked well for you. If you happen to read this could you tell me the name of that drug? Thanks so much. PMRpixie
It's all in the post immediately above this - Lodotra.
Pmrpro - Sheesh. I reread that previous post just a couple minutes after I posted this new one. I'd forgotten information over time. I deleted it right away but you were very speedy in spotting it ( sorry). Hence one of my biggest problems - death of brain cells via PMR. Hoping someday to return to who I used to be ??? You a such a generous source of information and inspiration too. Thank you for your dedication.
Alison12345 I was interested to read your post. Hair loss not been noticeable for me, rather I gained more hair - facial, downy, fluffy stuff but nonetheless not what I had in mind. My face seemed to fill out, but eventually I came to terms with a lot of this stuff, some wrinkles even looked less noticeable! Weight gain has not been a problem for me. Early on dealing with stiffness and pain, together with fatigue possibly made me eat less. I do try to eat healthily and have been avoiding bread and carbohydrates- more fruit and veg- plus reducing wine consumption. I ensure I have dairy products daily as borderline osteo. Who knows, I am not sure if any of this helps but I feel I need to have some control.
Yes, Parijm, despite my regular hair loss, I too have found that fine, short facial hair - like I need hair there? The side effects of prednisone seem to be endless ;-(
Alison-I have been on Pred. For 4 1/2 yrs. I started out on 15 and have went down. The worst has been getting below 5 mg. This is my 3rd time. I am now going to try what volunteer has suggested. The fatigue is aweful, if you cannot get a nap everyday and be able to sleep in, it is very hard. I am 66 and only work 2 days a week now which is wonderful, I can now rest more and spread my housework out into many days!!! In the spring I went through horrible hair loss, this has happened once before, once it stops it takes about 3 months for your hair to start growing again, be patient! Stress and PMR doesn't work well together. Also I have let myself gain 5 extra lbs, on top of the 10 I have gained since on Pred. It's all around the middle, wonderful right!!!! I am praying I can keep reducing until I am off, it's my goal for 2016!! PMR requires patients and lots of rest! 😎
Yes, Lafontainepam1, I guess patience is the key. Thanks for your reply. I think it also requires patience from those around you. I keep thinking that my husband must think I'll never get over this. He asks me every day how I feel and I just can't admit how awful I really do feel. My weight gain has me in to an entirely different wardrobe. I watch every single thing I eat but to no avail - and yes it all goes right to my middle! I am retired so am able to rest when needed but finding my stamina is less and less. Am going to try to go from 10 down to at least 8 this winter. GOOD LUCK on your reduction.
Alison, please remember to drop slowly or you will become so tired you won't want to do anything. And don't drop until their is no pain. If you over do with your house work or anything you will feel it. A little every day is the best. I know if I would cut my bread out, my mashed potatoes, and occasional Mac/cheese I would be doing better with losing some pounds but since I'm below 5 now I notice my anxiousness increasing. On real bad nights I take a small dose of Xanax, but that is only once a month at the max.
What a sweet husband you have, a real blessing, you will feel better, but it's a lot of balancing. I feel bad for those that have a full time job, it must be hell to keep up. It's wonderful to have a place that we can share what is going on with others, I am thankful! I'm here if you need anything! Pam 😊
Inevitably it is hard to avoid stress, since in my own mind I feel it is stress over some years that has given me PMR. Consequently I try not to become stressed over things, but that too is a learning curve. We just can't turn it off, but I am learning to be easier on myself. A little exercise is important and I try to walk as much as I can. I aim to step that up when I can reduce down to a 3 day working week. At 63 I don't think that's unreasonable. I attend a Pilates class once a week and I try doing 15 mins of gentle stretching at the start of each day. Our home is not as slick and span as it might be. Who cares?! I have been on 9 mg for a few weeks. I got down to 8 mg this time last year, but it was too fast a reduction then and I had to increase. I hope to reduce in a few weeks time but we'll see. The messages here from everyone say be easy on yourself, and reduce slowly. I think that's good advice.
It is marketed as Lodotra in Europe and Rayos in the USA. It is a time delayed release formulation that you take at 10pm and it releases at 2am so the max blood level is achieved about 4am, about the same time cytokines are shed in the body to cause inflammation. The drug design was based on a German study that found the best time to take ordinary white uncoated pred is 2am.
It is approved for RA in a lot of countries and for PMR in several including the USA. There were to be trials for its use in PMR in the UK as it had already been approved by NICE for RA in the UK. However, I was told recently that there has been an edict that it is not to be used even for RA in the UK and on searching have just found that was the case in 2011. I know a couple of people in the UK who are/were taking it but they get it on private prescription. It comes in 1,2 and 5mg tablets because obviously you cannot cut it to get smaller doses. 30 tablets of any dose cost about £25 so, depending on the dose you require and whether you make it up with 1,2 or 3 tablets, the cost can be up to £75 per month.
The advisory in 2011 that didn't recommend it said:
"One years supply of Lodotra® 1mg/2mg/5mg MR tablet would cost ~£325 compared to ~£13 for prednisolone 5mg tablets"
Given the state of the NHS it is hardly surprising it isn't approved.
I have had no morning stiffness at all since taking it and have been able to manage on far lower doses than was the case with the Medrol I was on beforehand. I had gained a lot of weight - I have lost it all. No signs of Cushing's any more at all - which was the top note on my hospital discharge letter 3 and a half years ago! But I'm not in the UK - and prednisolone which had had fewer side effects for me isn't available here in Italy. If you can't take Medrol the only option is Lodotra - which means here they accept it is superior in some respects or they wouldn't fund it since they are very strict.
Hi PMRpixie, I can certainly relate to the debilitating fatigue and ocular pressure ( I'm at 14 mgs from 20 in my reduction 4 months in). The shower being an exhausting chore and the pain suggests that the inflammation is not taken care of. My weight ( appearance only I ignore the scales),seems to jump about from bloated to feeling boney almost.Have you had your Thyroid levels checked? I have Graves' disease and some of what you say rings a bell for Hypothyroidism. Especially eating little and weight stubbornly stays. People on here have talked about taking a year after ending Pred to get back to normal. Good luck with the reduction, there's no rushing it much as we want to put Pred in the past and all it brings with it. I find it too easy to forget crawling upstairs and being unable to get out of bed without help and pain that made me throw up. Hang on in there with fairy steps.
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