Pmr help

[sandy4348]

Hi. I’m new here and I thought I was the only one with PMR. Never heard of this before. I’ve been to two different doctors and can’t believe there’s no other help than Steroids. So far my ranges have been changing from 20mg, up and down. I’ve been on steroids since August 2017. Sometimes I blame this feeling on just getting older. I also read that being on steroids for a long period of time is not good. Is this true? Gaining weight is really depressing me. Thanks for listening

[SnazzyD]

Hello and welcome. It might help if you give a bit of detail about what has happened with symptoms and dosing since diagnosis. What are your problems now?

Many of us have avoided weight gain and some have lost weight while on steroids by cutting out carbohydrates that come from potato, rice, bread, pasta, stuff made from flours etc. It also helps control the tendency to get higher blood sugars while on Pred.

As for steroids being bad for long periods, the higher the dose the more likely you will get the side effects in the leaflet. Once you get into single digits it reduces a lot and below 5mg is much safer.

The experts will be along shortly.

[PMRpro Ambassador]

Yes - there are quite a lot of us, 2000 regular users of the forum at present!

I've been on pred for well over 9 years - I have no apparent adverse effects. I hasten to add I AM very unusual in terms of the duration of PMR! Most adverse effects of pred can be managed or reduced when you know how - and you are in the right place for that sort of advice. Weight gain can be minimised by cutting carbs drastically, especially white and processed ones. I lost 35lbs of PMR and pred-associated weight like that, got my normal face and waist back and now have had little trouble maintaining my weight for 4 years.

Can you tell us a bit more about how you have been told to reduce the dose of pred, why you have been going up and down - anything like that. There is no really good reason for it being that difficult when you go about it the right way. Are you under a GP or a rheumatologist?

[YuliK]

Sandy Hi

you have arrived to the right address for advice and help.

PMR/pro and others here, give smashing advice, and believe me , if you follow the advice given here , you will gain lots of confidence as to how to get a handle on this debilitating disease.

Yulik

[sandy4348]

I just read some old postings and the majority said they only see their PC..I thought a rheumatologist only treated pmr. Is this good advice? Thanks

[PMRpro Ambassador in reply to sandy4348]

Sorry - don't understand what you are saying? PMR and GCA are the same disorder, just opposite ends of the spectrum. Mostly PMR can be managed by a PCP/GP but sometimes it needs the expert input of a rheumatologist. GCA always should be referred to a rheumatologist or other suitable specialist.

[Mkhj]

I was diagnosed in Dec 2918. Hadn’t heard of it until I googled my symptoms (never wise)! Then when I was given diagnosis with gp it seems several of my friends’ parents had it! They were in their 80’s and I was 54 so found their reassurances less encouraging. However, this site has been a source of so much invaluable information. Have managed to lose 1 stone by drastically cutting carbs and sugar. Thus was not intentional.. it was my goal to avoid weight gain but I’m certainly not complaining about the side effects... better than the potential cataracts and osteoporosis anyway. I’m now at 81/2 mg of pred. Started mid Dec on 15.

I have appreciated the super advice here and feel so much more informed than the day I left the surgery clutching my prescription.

Take care.

[Soraya_PMR]

Welcome to the forum Sandy. Sounds like you’ve had a rough time so far, but worry not! Things will get better now, you’re part of the PMR gang.

[JohnnyQ50]

Hi Sandy

You may find this interesting if you haven’t already read it:

practicalpainmanagement.com...

[PMRpro Ambassador in reply to JohnnyQ50]

It has been put up on the forums repeatedly! Obviously i need to put it up again!!

[JohnnyQ50 in reply to PMRpro]

Yes I found it very reassuring when I came across it last year, it also has some links to other great articles on advances on PMR management👍

[Mai45]

Sandy, Just to add what everyone else has said. Few of us had heard of PMR before we were diagnosed. I was convinced I was going to be disabled for the rest of my life when I increasingly struggled to turn over in bed, let alone to get out of it and attempt the impossible task of doing up my bra and getting dressed!

This forum is a godsend. GPs don’t have time to go into all the detail. PMRPro, who has already replied to you, Dorset Lady and so, so many more are incredibly knowledgeable and will help you so much.

Try not to panic about steroids. They really are the only way to control the symptoms. PMR, for most of us, won’t last for ever. Keep asking questions. Here is where you will find real answers.

[Telian]

Welcome Sandy,

As PMRpro has already said we can't answer specifics without knowing a little more about your current tapering regime. One thing's for sure you will get lots of helpful advice that cover any query you have.

Just remember that we are all different and what works for one won't necessarily for another but you will have a better idea on how to manage than you currently are.

Best wishes.

[Hidden]

Hi sandy.

pmr is a pain in all senses of the word. As others have said perhaps some context for the up and down of steroids could help us help you more. It is not unusual for some fluctuations in the first year or so. Some drs try and reduce steroids too quickly and you are the one who suffers when you start the rollercoaster of increasing then rushing to reduce again. Sometimes it's down to not fully understanding your own personal relationship with PMR and pred. Sometimes steroid withdrawal can cause pain increase and we panic and go back to original dose or higher. In general any pain that increases the first few days of reduction is probably withdrawal. My right shoulder was my marker for withdrawal. OTC painkillers helped with that. If after a week or two symptoms start returning then you are probably starting to flare. That doesn't mean PMR is 'coming back'....more that it was still active as you reduced and your pred dose not enough. Reducing carbs will help keep weight under control but don't be too hard on yourself. The first year I was in a pred/PMR head daze. You will start to have more good days than bad soon enough. 🌻

[Noosat]

Hi, A lot of good information posted already. I was diagnosed early December last year. I have recently reduced Prednisone dosage from 20mg. down to 3.5 mg. This may be too fast, however, I should know, I think, within a week. For the last 4 days OK. I stress a good diet and exercise to help with side effects. I found sugar the worst thing I could eat, brought pain back very quickly after eating large piece of birthday cake. I believe in lots of organic fruit and vegetables, and anti-inflammatory spices. Exercise, I cannot get anywhere near what I used to do, but walk as much as possible and do stretches. No weight gain, but no loss as my diet is much as it used to be.

[Mjhollywood1]

Hi sandy. Welcome. I to have not heard of p m r till I was told by the rummy I was about 53yrs old very fit gym girl, boater airline employee , I live in south Florida work about 10 hour a day on my feet! This form taught me a lot. I went from size 0 to 6 .I am now a veggie girl no bread or sugar( expect wine ) no meat I believe the diet has helped with the Pmr . I start at 25mg two years ago now down to 2mg back to 5 mil where I am at. Some days are hard ! I just keep staying it’s going to end soon . And yoga In Place of my boxing and lite weights . I started cbd oil. Last week (no t h c ) and it helps with sleep. I have been told the cbd with thc works much better! Still working so legally I can’t. I read daily. In the United States I have not found support meeting or many people with P M R . I enjoy the talk from across the pond !! Good luck

[Lanakay in reply to Mjhollywood1]

Mjhollywood1, are you in Hollywood, Florida? I ask because I’ve vacationed there and loved it. I live in Nebraska.

[Mjhollywood1 in reply to Lanakay]

Yup. Live near the beach off Hollywood bvd

[PMRCanada in reply to Mjhollywood1]

We just returned from a 10-day vacation in the Miami area and spent a day at Hollywood Beach. Loved the boardwalk! Divine.

[Lanakay in reply to Mjhollywood1]

After this record breaking Nebraska winter that sounds really nice. Now we have record breaking floods! I am thankful that my family and myself are all on high ground.

[PMRCanada]

Welcome Sandy. I was in shock when I was diagnosed with PMR May 1/18, but also relieved to have a diagnosis after six months of progressive pain and stiffness. I was also very hesitant to take pred, but have come to accept and realize it is a big part of my management of this condition.

I’ve had only a few side effects in the last 10 months (skin bruising easily, mild hair thinning, some mood swings), and these I can live with....pred I cannot. Beyond our symptoms and tapering plans, there are impacts on our relationship with others, and I needed to make adjustments accordingly.

I hope you find this forum helpful. You are not alone....we “get it”.