A Cautionary Tale about taking high levels of Prednisone
Posted , 11 users are following.
Hi, I've been to this forum many times over a few years. I guess it would be about four years ago I was diagnosed by a rheumatologist as having PMR. The dose Dr. P gave me was 20mg and I instantly felt better. Oh, my goodness, I could walk without pain! I felt almost like I was 30 again instead of 60. The good sort of faded a little, but I was still much better, and I could lower the dose down to 13mg. But everything went smash when I got pneumonia. My blood counts went up and I felt worse again. My Dr. P. died meanwhile and now I have Dr. H, who raised my dose to 30. So as I went along these years, I've tried so hard to cut down on the dose, but the pain returns to me soon after I try to go gradually down. I take 25 now.
So, recently, my pain has been so bad that all three of my doctors (rheum.,general, and pain) are putting me through many tests. A chest xray showed what the dr thought was another pneumonia, but a cat scan showed it was scar tissue from multiple fractues in my ribs. BEcause of this I am on oxygen all the time and get breathless when I do the least little thing. The doctors all say that my high dose of pred. has caused these fractures. I also had an MRI on my lower back which showed very bad arthritis. I'm to have an epidural for the lower back pain. I will be curious if it will help me. Does an epidural help the pain of PMR?
I am so upset that I don't know what is wrong with me. Is it PMR that won't go away? Or is it arthritis taking over my bones? I cry every time I try to go down on the pred dose and find myself in that inflammatory-type pain that is so hurtful.
0 likes, 19 replies
lynda62707 DebbieHurts
Posted
hey Debbie.....1st, I'm so sorry you're having such a difficult time. this whole trip of pmr, prednisone, and all that comes with it really SUCKS!
I too, am on 24/7 oxygen, (nothing to do with pmr), but nevertheless I can completely relate to you. it's totally changed my life, and not in a good way.
I've been on pred. for 1yr +7mo. hate what it's done to me in all kinds of ways, tho' I will concede it helped with the pain quickly.....tho' I can't seem to get lower than 3.5mg w/o problems. now I'm back to 5mg.
I had x-rays of my back (as it hurts ALL the time). was told I've got compression fractures all along my spine, most likely brought on by prednisone, (or, at the very least that contributed).
a few months ago I was diagnosed with lymphoma.
I can't even talk about that yet.
when I saw my Rheumy a couple weeks ago, I told her I'd gone back up on the pred. and she wasn't a happy camper! she wants me off of it asap. when I asked her to do bloodwork to find out my numbers, she said that they wouldn't show up true due to the lymphoma.
so I'm in kinda a bind right now, cuz I sure as hell can't control any of this😠.
as far as the epidural, I'm only familiar with them as it pertains to childbirth, so I'm a bit confused. but things change, and maybe they use this for other problems as well.
in any case, I'm thinking of you and certainly pulling for improved health for you.
Please keep me posted.
from one complicated person to another.❤
ina0821 DebbieHurts
Posted
I TRULY BELIEVE THAT THE TREATMENT WITH HIGHER DOSES OF PREDNISONE HAVE ME FEELING SICKER WITH SO MAY SIDE EFFECTS THEN THE DISEASE ITSELF I SUFFER WITH EXTREME EDEMA AND ALOT OF WEIGHT GAIN, WEAKNESS, FATIGUE, ELEVATED BLOOD PRESSURE AND SUGAR, BREATHLESSNESS, TERRIBLE SHAKINESS AND WEAKNESS ETC MY LABS ARE GOOD SO WE ARE TAPERING SLOWLY WAS ON 20mg initially back in march then in august I FLARED TERRIBLY DESPITE LABS EVENING OUT amd i went up to 40mg now down to 25 mg and as long as labs stay okay i will taper slowly
constance.de DebbieHurts
Posted
SO sorry you are still suffering so much Debbie. You are one of the 'longtimers' I know. There are a number of us that have been on this (and the HU) site for many many years (7 1/2 for me). However I am much luckier than you - I keep relatively pain free from PMR on 4 mg Pred. If I try to reduce I flair!
The Polyarthritis I have is much more painful - and that won't go into remission! Walking, exercising of any sort, is agony, but I do try and get out into the fresh air as often as possible.
Just wanted to say "you are not alone".
HUGS and best wishes from Constance.
EileenH DebbieHurts
Edited
I think it is far more likely that they missed (and are missing) something badly - all the guidelines say that patients who can;t reduce MUST be investigated for other things. And that patients on long term high dose pred need dexascans and bone-protection meds as required. They can blame pred, it may well have been, but they are at fault too but they aren't admitting it.
In the US it is possible to manage PMR with Actemra for patients where pred is a problem. For any of you - has it been considered?
Lynda - are they going to look at treating the lymphoma? It can cause many of your symptoms.
lynda62707 EileenH
Posted
Eileen, for the time being, they're just monitoring it with monthly bloodwork. If there are no changes for the next few months, (till after the holidays) the doctor will reassess at that time.
DebbieHurts EileenH
Posted
Thanks Eileen, I mentioned Actemera before to the rheum. and she came back with the suggestion of Humira, which I read about and got scared of the side effects, so didn't start it. I will ask her why Actemera isn't on her mind instead.
I sometimes, too, think there is something weird wrong inside me. I've had so many tests, though, that show mostly arthritic problems (not rheumatoid). The latest thing with my lungs having scar tissue from fractures, which make me breathless is really odd. The tests I have in front of me are some blood tests for vitamin deficiency, a mammogram and a bone scan.
EileenH DebbieHurts
Posted
Humira would be OK were it not for the fact that, as an anti-TNF agent, it is expressly warned against in the PMR guidelines!
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 8.
Horses for courses - and in Humira that is the WRONG horse 😉
DebbieHurts EileenH
Posted
Here is what my dr wrote today when I mentioned Actamera again; A much better option rather than prednisone would be those biologic medications that we printed out information for you to read at your last visit in July 2019. I would recommend a medication called Humira or another medication called Remicade which is an infusion or medication called Cosentyx. Did you happen to read the information that we gave you? These medications are strong and will cut down inflammation and will enable you to get off the prednisone and stop all the side effects you are having from the prednisone.
Maybe she has read a more recent article? Thanks for your interest and expertise, Eileen. Debbie
EileenH DebbieHurts
Posted
I doubt it - and she is wrong. The experts in PMR/GCA know more about which biologics work than she is likely to - is she in the habit of arguing with the top people in the field in the world, like the Mayo? anti-TNFs do NOT deal with the relevant inflammation pathway in PMR/GCA and are more likely to cause problems.
This article is from 2018
https://academic.oup.com/rheumatology/article/57/suppl_2/ii51/4898136
and says:
"... evidence provided the rationale for conducting clinical trials to investigate TNF inhibition with infliximab, etanercept or adalimumab in GCA. Unfortunately, TNF-α blockade did not provide an advantage over placebo in maintaining remission in newly diagnosed patients [76–79]. The disappointing experience with TNF-α blockade underlines the fact that a biomarker of inflammation is not necessarily a therapeutic target and suggests that TNF-α functions may not be essential for the maintenance of vascular inflammation, or can be supplied by redundant pathways."
Cosentyx works on another pathway and it MIGHT be worth exploring as there is currently a small-scale clinical trial using it in newly diagnosed GCA - not PMR but they are supposed to be the same disease so it might work.
The whole point of using a biologic is that it is highly targeted therapy - and if you try to use a therapy that is aimed at the wrong place, it won't work so you have the risks with no balancing benefits.
ina0821 DebbieHurts
Posted
i am confused i thought i read that pmr is a self limiting auto-immune disease that will eventually go away and while it may take years it does burn oit eventually . the idea that we would have to be on a low maintenance dose of prednisone indefinitely does not sit well with me due to its side effects i had healthy blood pressure and sugar counts before. now both are elevated the edema is out of control and i have gained 20 pounds eating the same i akways have. heaven only knows whats going on with my bones at this point because instarted at 20mg but flared so badly while in italy that dr had me double to 40 but now tapering and at 25mg which is still high . the steroids are making me feel sicker then the pmr. my stiffness is not quite as bad however my walk and speed of gait is mich slower due to hips and knees. im also weak in legs and shakey if standimg. this disease is not as benign as some think and unless you daily deal eith it or live with someone who is going through it, you cant begin to understand how debilitatimg it is.
EileenH ina0821
Posted
"i have gained 20 pounds eating the same i akways have"
That's the problem - pred makes you metabolise carbohydrates differently and you can gain weight, Cut carbs and it is even possible to lose weight as well as reduce the risk of developing steroid-induced diabetes. Try it - or visit the HealthUnlocked PMRGCA forum where plenty of members will tell you their weight management stories if you don't believe me.
It is said that 40% of patients on pred will develop osteoporosis - 50% of the US population will de diagnosed with osteoporosis at some point in their lives. Doesn't seem much different to me - suggesting that many people already have low bone density before starting pred. In over 7 years on doses of pred at above 10mg my bone density had barely changed. If you have a dexascan at the outset you know - and can plan accordingly and take bone protection medication of some sort.
If you required 40mg to manage the symptoms, your doctors should really have been looking for other possible problems - which might of course include having large vessel vasculitis or GCA. However - we have to do our part in managing PMR. Pred cured nothing - it is supposed to allow a better quality of life while waiting for the underlying autoimmune cause to burn out. That takes a median duration of just under 6 years but most people are at a dose well below the physiological level within 2 years, even if they haven't been able to get off pred. But at 10 years while 40% of patients may still be on pred, that is mostly at 5mg or less. I'm at over 10mg still, I have been down to 5mg at one point. But I would never go back to the state I was in for the first 5 years of PMR with no pred. THAT was hell on earth.
DebbieHurts ina0821
Posted
I so agree that people looking at me don't realize how horribly hard it is just to get up from my chair. I walk around the house with the walker, do my chores, go to my appts. but it is Hell! I end up so breathless and in such pain I freeze up and can't move another bit. My edema is bad, too, and I have gained much more than 20 pounds. I've tried to keep to uncarbed food, but I still don't lose weight.
bobbir ina0821
Posted
thank you, I couldn't have said it better. I'm not much of a writer. this is me. I'm still on 50mg treating Gca. every two weeks something new?? and generally awful.
lodgerUK_NE DebbieHurts
Posted
Debbie
Where you prescribed Alendronic Acid for Bone protection at anytime?
DebbieHurts lodgerUK_NE
Posted
Yes, I was. Also I am now taking Prolia shots.
lodgerUK_NE DebbieHurts
Posted
How long did you take the AA for and where do you live, UK or outside the UK?
DebbieHurts lodgerUK_NE
Posted
I took the AA maybe two three years before they started the Prolia which is every six months and I've had three of them so far. I'm in the States.
lodgerUK_NE DebbieHurts
Posted
The FDA have issued a warning on both................suggest you check it out.
AA can cause random unexplained fractures............