Do not want to take steroids.

Posted by sandyclaire1313 @sandyclaire1313, 6 days ago

I was just diagnosed today and I am considering not taking any steroids. Their side effects out way the pain. Initially I saw a physical therapist and the exercises helped and those type of exercises also help with our diagnosis. The pain is worse in the morning but as the day goes on the pain dissipates. I appreciate any feedback and your thoughts.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@sandyclaire1313

Good and bad news. My lab results indicate I don't have this diagnosis which is fantastic. However, my doctor doesn't know what I have. She suggested I go ahead with the Prednisone as there is most likely inflammation. I declined and I will closely monitor my symptoms. I do appreciate all of your support and wish you well.

I

Jump to this post

Blood tests for ESR (erythrocyte sedimentation rate) and CRP (C-reactive protein) show inflammation and are standard diagnostic tests. Your doctor mustn't have had those tests done if they say only that there is "most likely" inflammation? You can ask your doctor for copies of blood test results to monitor it for yourself.

REPLY

Both are in normal range. I have asked for a referral to an appropriate specialist as I still have the same symptoms.
.

REPLY

Obviously, treatment options are 100% our own decisions, so I wish you the best, whatever it is you decide. However, I figured I’d just give my perspective because you sound the same as I felt when I was diagnosed this past summer. I was nervous about the need to take steroids reading the short and long-term side effects and just assumed I would get every one of them (I haven’t). After asking multiple doctors and digging around on my own, I quickly decided there wasn’t enough supporting information out there that non medication approaches would work for me. I reluctantly decided to start taking prednisone, 15 mg once per day in the morning and I’m glad that I did and I think my long-term health will be better for it. By the way, I’m at 8 mg per day now, decreasing by 1 mg every two weeks on advice of the rheumatologist unless I get a week where I’m not ready and I just stick with it a few more days. Generally speaking it’s going well. I also wanted to do everything I could to prevent some of those side effects even though the data says some of them are very common. Over the last several months I completely switched my diet to be all healthy . I stopped drinking even small amts of alcohol, haven’t eaten any processed foods, desserts, and I’ve made it a point to exercise every single day. I don’t overdo it, and most of the time I’m just walking for exercise, but over the last several months I’ve lost 25 pounds, my blood pressure is lower than it was when I started prednisone , my cholesterol has dropped from 190 to 150, my face or body have not retained water, and I haven’t noticed any redistribution of fat. . Yes I have had to make some adjustments like splitting the dose of my medicine, and some days I have to take it easier than others because I don’t quite feel 100%. As far as the side effects that I did have, they have been very tolerable. At the higher doses, it made me a little jittery the first several hours of the day, my feet felt a little swollen, but not too bad, and I had some slight elevated blood pressure at the higher doses that went away as soon as I got below 12.5 mg per day. All of it was completely tolerable and today I feel really good, pretty much like my old self. Best of luck on your decision and get well soon..

REPLY

Everyone's reactions to prednisone are different. I did not gain weight or change my diet. I had already cut back alcohol when symptoms started. I was not correctly diagnosed for four months. Prednisone did interfere with my sleep (but not as much as pmr did), it thinned my skin and made healing slower. But I would trade those symptoms for pmr any day of the week. I started at 10 mg and took 2 or 3 weeks to feel 100%. Then I felt like superwoman until I started tapering. I tell people I was 68, then felt like 100 with pmr, then felt like 30 on prednisone, now feel my age at 70 and 1mg and side effects are subsiding. Only had one slight flare tapering 10% a month. You must decide, but I hope my experience has been helpful.

REPLY

This large retrospective study made me a lot less worried about prednisone, which I absolutely must use or I have no life.
https://pubmed.ncbi.nlm.nih.gov/28704600/
In 5 years we will all be 5 years older. Some of us will develop diabetes, hypertension, hyperlipidemia, or hip, vertebral, or Colles fractures, regardless of prednisone use. That's what it says to me.
They also give stats on how long and how much prednisone people are actually needing.

This may never be over for me. Started on 20 mg, split and have flared constantly on the way down to 3mg. My CRP is just going up, now at 30. Only problem I had over 10mg was thin fragile skin. I have lost 10% of my body weight, not gained.

REPLY
@sandmason

This large retrospective study made me a lot less worried about prednisone, which I absolutely must use or I have no life.
https://pubmed.ncbi.nlm.nih.gov/28704600/
In 5 years we will all be 5 years older. Some of us will develop diabetes, hypertension, hyperlipidemia, or hip, vertebral, or Colles fractures, regardless of prednisone use. That's what it says to me.
They also give stats on how long and how much prednisone people are actually needing.

This may never be over for me. Started on 20 mg, split and have flared constantly on the way down to 3mg. My CRP is just going up, now at 30. Only problem I had over 10mg was thin fragile skin. I have lost 10% of my body weight, not gained.

Jump to this post

This study has many flaws so it isn't very credible. In any case, there are hundreds of studies which come to a different conclusion. You need to evaluate the entire body of research and come to your own conclusions and not rely on one study.
----------------------
"I absolutely must use or I have no life."

This part I completely understand and I came to the same conclusion when I decided to take prednisone in the "short term."

In the "long term" --- I decided the side effects of prednisone weren't worth it. A ton of research says the "long term" risks of prednisone are substantial. The problem is the body becomes dependent on us taking prednisone because it replaces the cortisol our bodies normally produce. I was unable to stop Prednisone even when I experienced all the side effects.

We all have to come to our own conclusions. If Prednisone works for you -- I'm happy.

REPLY
@sandyclaire1313

Both are in normal range. I have asked for a referral to an appropriate specialist as I still have the same symptoms.
.

Jump to this post

Here rheumatologists refuse referrals for people with PMR symptoms, so we have to figure it out ourselves. Firstly, we are mostly all on Medicare, which would fill their practices with low paying patients. Secondly, the only way they can make a living now is with their own infusion centers for the new biologics. Kevzara works for PMR but it's extremely expensive and isn't covered by Medicare UNLESS it's given by the doctor. So there is some kind of new Medicare racket, I think. I don't think a family practice doc can do it but I may be wrong. It can cause rupture of the colon in people with diverticulum, as many of us over 70 do. ( A new reality for me just this year) Weakened by prednisone, our inner skin also gets fragile.

REPLY
@54pontiac

Everyone's reactions to prednisone are different. I did not gain weight or change my diet. I had already cut back alcohol when symptoms started. I was not correctly diagnosed for four months. Prednisone did interfere with my sleep (but not as much as pmr did), it thinned my skin and made healing slower. But I would trade those symptoms for pmr any day of the week. I started at 10 mg and took 2 or 3 weeks to feel 100%. Then I felt like superwoman until I started tapering. I tell people I was 68, then felt like 100 with pmr, then felt like 30 on prednisone, now feel my age at 70 and 1mg and side effects are subsiding. Only had one slight flare tapering 10% a month. You must decide, but I hope my experience has been helpful.

Jump to this post

"now feel my age at 70 and 1mg and side effects are subsiding."
----------------
This is the goal we should strive for --- not superwoman and not many years older than our chronological age

I once told my doctor that I felt more normal on Prednisone. Her reply was something similar to the following:

One of the side effects of Prednisone is a "false sense of well-being." We all want a return to normal but I was told that things were "not normal if I needed to take Prednisone." Medically speaking ... taking prednisone is not normal. The same can be said for other medications but most of the other medications I was taking were treating prednisone side effects.

Just some food for thought.

REPLY

You might try seeing a naturopathic doctor. I received some mushroom powder capsules (not hallucinogenic) which have significantly reduced my pain.

REPLY
@sandmason

Here rheumatologists refuse referrals for people with PMR symptoms, so we have to figure it out ourselves. Firstly, we are mostly all on Medicare, which would fill their practices with low paying patients. Secondly, the only way they can make a living now is with their own infusion centers for the new biologics. Kevzara works for PMR but it's extremely expensive and isn't covered by Medicare UNLESS it's given by the doctor. So there is some kind of new Medicare racket, I think. I don't think a family practice doc can do it but I may be wrong. It can cause rupture of the colon in people with diverticulum, as many of us over 70 do. ( A new reality for me just this year) Weakened by prednisone, our inner skin also gets fragile.

Jump to this post

I am on Medicare Plus Blue and Kevzara is covered. My copay is $38 a month. Probably depends on what state you live in. It worked like a miracle for me. I self inject at home.

REPLY
Please sign in or register to post a reply.