Stopping steroids.

[Ellie135]

Hi all,, new to this site and I love it! Diagnosed with PMR about 3 months ago, prescribed 20mg pred, wow! I thought my life was sorted until the weight started to pile on 😭😭 this has caused the spondylosis in my lumber spine to more or less leave me housebound so Dr has agreed to wean me off pred. Once I'd dropped to 15mg, after the initial dosage my symptoms came back around 75% anyway. Has anyone any suggestions, besides not eating, to manage the symptoms. 😘

[knit1purl2]

Trying to reply on my Kindle Fire which is not always easy. I was on 60 mg pred in January for GCA and knew it would cause weight gain. I went to mostly clean eating - lean meat, chicken and fish, vegetables and fruit, whole grains and only eating until I was satisfied. They are very filling foods. I follow the Simply Filling Technique with Weight Watchers and it has really helped. And I have lost my craving for sugar.

[PMRpro Ambassador]

You will find the symptoms return if you reduce the pred below a "maintenance dose" - and that is something you find by reducing the dose slowly from the starting dose until you find the lowest dose that gives the same result the starting dose did.

After about 4 to 6 weeks on that starting dose to get all the existing inflammation well under control you should have started to reduce by 2 or 2.5mg at a time. You don't stay at that level but dropping in too big steps may cause the PMR symptoms to apparently reappear - except it isn't, it is your body objecting to the removal of its pred fix. That sort of pain will improve over the next couple of weeks. Return of the symptoms because the dose is too low tends to start after a week or so and then increase as time goes on.

This is a description of a very slow reduction - it is perhaps a bit too slow at the 20 to 15 level but some people need it even then because they are very sensitive to the change in dose:

healthunlocked.com/pmrgcauk...

It is has been approved by several rheumies and is actually being used in a clinical study in the north of England. It avoids the steroid withdrawal discomfort and identifies the long term dose pretty accurately - a lot of people have found that using this they can get to a lower dose than they've managed otherwise.

As far as the weight gain is concerned quite a few people have found it is possible to lose weight by cutting carbs drastically - especially processed ones, sugar and flour products and fruit except berries. That still leaves a LOT you can eat! I lost 17kg of pred weight gain that way. Others have found doing that meant they didn't put on any weight to start with.

Managing the PMR symptoms? Not so easy. Pred, and enough of it, is the only way to stop the pain and stiffness. I had PMR for 5 years before it was diagnosed and I tried all sorts of things. The days I could go to the gym for an aqua class in a warm pool early in the morning weren't too bad for stiffness. I did Pilates and yoga once a week, both adapted for what I couldn't do and that helped. Some of the back and shoulder pain that was caused by my muscles protesting at my not being able to walk properly (add-ons rather than PMR itself) was helped by visits to my osteopath and Bowen therapist.

But for over 5 years I never had a day without pain and was housebound if I couldn't go somewhere in the car and not have to walk far - and no disabled badge for parking either! I got up stairs on my hands and knees or by pulling myself up on the handrail - which just made my back and shoulders even worse. No handrail - no going up stairs in public! 15mg of pred was a miracle in 6 hours. I had put on a lot of weight because of not being able to exercise properly - so even PMR with no pred can mean weight gain. That weight redistributed on pred, I didn't put a lot more on until I was switched to Medrol rather than prednisolone - and then it went on big time. When I was switched back to a form of prednisone - I was able to lose the weight again and start moving which helped a well of course.

There is no easy answer either way.

[piglette]

Ellie, I am so sorry you have had pred side effects. If your doctor wants to wean you off pred what is he suggesting to help the PMR? I shudder at the thought of giving up pred while I have PMR. As PMRpro says pred really is the one option for PMR. It really is a life saver I think. I gave up gluten and simple carbs when I started pred as I was told that would stop a moon face. It does seem to have worked, although I got lots of other side effects to make up for it!

[allykat]

Hi Ellie

I can only comment on the weight gain. I was diagnosed with GCA in April 2015 and started on 50 mg of prenisolone and hope to reduce today (am seeing my Dr) to 6 mg. So far I have had no flares neither have I put on weight (except the 7 pounds I lost when I first became ill). I also have not developed a moon face. I put it down to being really strict about my diet. I have stayed almost totally gluten free and religiously stuck to low carbs especially avoiding "sugar" carbs. Have also been pretty watchful about my "starch" carb intake and have limited my helpings of potatoes and white rice. There are still so many allowable foods out there that I have not felt deprived at all. As far as sugar is concerned, the less you eat, the less you crave. Hope this helps and as Piglette says, I have not escaped lots of other side effects so all is not perfect!

[Hidden]

I put a lot of weight on as well unfortunately I am overweight anyway ,oops . Its not the predisnole that puts it on ,well I don,t think so . It, s the raging appetite I get and the inactivity . I work but when I am stiff or in pain ect thats all I do . Nothing else . That dosn't help .I just lounge around or so it seems and wait to go to work the next day . Self employed so have to go .House work pfft oh yeah ,not a chance . Bare minimum . I have signed up with Slimmers World ,not really my scene but I think diet is the only way for me .The result of the pred after you have floundered about in my case for nearly a year before the Doctor came up with a name and a solution ,its like a miracle isn't it but nothing comes without baggage . Weight seems to be a big problem .Underactive thyriod making it worse . We have to make choices . I am going to have to face it . I have to diet ,even if you just do enough to stay the same its a start . The meals they suggest look enough to enjoy .I have only just started this week so can,t say much yet .We will see .

[autrainriver]

There are many things you can eliminate from your diet as others mentioned. I have eliminated sugar, wheat, flour, soy, nightshades, most dairy (use clarified butter and eggs), fried food and desserts. Friends ask what's left to eat. Actually quite a lot, but it takes a paradigm shift and planning. Two good cookbooks you might look at are Whole 30 and Against the Grain. Both of these books have programs to get started on an anti-inflammatory diet and have a lot of recipes. I also exclusively buy food at the health food grocery where you still have to read labels. Eliminating pesticides from fresh vegetables and fruit can't be bad for you either. Pain has driven me to abide by the eating rules. Good luck!

[Joyful13]

I continue to be on Prednisone 40mg for GCA, after slowly reducing from 60mg. I do have the "moon face." I had started Weight Watchers before I was diagnosed with PMR/GCA.

It's been very difficult to lose more than 12 pounds, but I continue to attend Weight Watchers as otherwise, I'm sure I would be gaining weight. The group is very supportive of everyone, and I receive many benefits from going.

I continue to have GCA symptoms, but they have improved. I also have a lot of pain in my shoulders and upper back.

Take care. It is a roller coaster, but every once in a while the roller coaster stops and you can get off and have some good days.