Into another flare.
Posted , 18 users are following.
I have been struggling with pmr for 5 years. Have been to 2 differant Dr.s both putting me on very slow taper and it keeps coming back. I have to suffer for mths. before my blood work varifies my condition. Ive been on 3 mg since mid Jan. and have gradually gotten worse to the pt of being miserable now. Every time I hear a speech about the dangers of long term pred. use. Just dont know what to do anymore. I dont think anyone knows what it is like unless they have been through it. I just turned 61 and have always been very active and healthy. Right now I feel 90 . Waiting for a call back from Dr. due to C19 office closures.
0 likes, 33 replies
karenjaninaz patti52108
Posted
PATTI, It will be 5 years for me in NOV. I taper 1/4 mg at a time and now at 5mg. As we get below 10mg the side effects from pred decrease. I even notice less tendency to bruise and my weight is the lowest in years.
The symptoms of flare are similar to going down too fast on pred. Some practices have a pmr patient stay many months at 5mgm.
You will get excellent feedback from other fellow travelers here.
joanna39212 patti52108
Posted
Hi Patti
I 'have' been through it. And I'm still tapering (lost about 1/3 of my hair.... common in tapering... grows back I'm told.... fingers crossed.)
As soon as I'm off the pred.I'm going to go on CBD (medical hemp), with an MD who works with this. I'll let you know how it works out.
Tinapoly1 joanna39212
Posted
I lost 95% of my thick ,long hair a year ago,after a year on Prednisone & now have 5 new inches of hair for which I am grateful but after 50 years of having long hair it is just one more adjustment of looking at a stranger in the mirror,not only from having short hair but I have always been thin so to gain 55 lbs. is the most devastating thing to me since I eat like a bird so it's not like I can diet since I eat too little as it is. It took me 18 months to get from 7mgs. to 5mgs.but since I am loosing my immune system from the Prednisone & almost dying from 2 flus in just 3 months with my lungs filling up so fast that I felt like I was drowning my rheumatologist said I had to get off the Pred. I mg at a time. I body couldn't handle 4.5 or 4.75mgs for 3 months so back to 5mgs. .At 5mgs.for over a year now my skin is still bruising & tearing easily but half of my calf muscle tore off the bone from just getting up from the couch & taking one step. I also had 2 surgeries & my doctor went to sew up the insides & the stitches just tore through my tissue so my doctor did micro surgery & sewed me from the outside in. My doctor put me on daily diuretics & I lost 15 lbs. in just a month since I couldn't even get my shoes on but still up 40 lbs. & I worry about my kidneys being on diuretics on a daily basis. If I go off of them for just 4 days the water retention is so noticeable so fast. In reading other posts I now realize that I was having bad signs of GCA & had no idea it was that & I didn't even tell my rheumatologist. I had a severe temple headache for a week or 2 , worse & more severe headaches than normal ,& also bad pain on the top & sides of my scalp. All that from just trying to go down a quarter or 1.2 mg.
Michdonn patti52108
Posted
Hi Patti, PMR is not cake walk. I been on my journey 4 years, low point in a wheelchair, unable to walk. The forum help and encouragement helped me get back on my feet. I have not been worried about taking Prednisone, it has allowed me to have an almost pain free normal life. Did I gain weight, yes. Was I irritable, yes. I am a diabetic, was it hard to control my blood sugar, yes. I now have cataracts, will have an operation when the pandemic slows down. But I have been able to live my life mostly PMR pain free with a few inconvenience, because of Prednisone. I learned not to reduce if I have any PMR pain. If I have a flare increase and reduce very quickly. Think that the pain is only a symptom of the inflammation, we most control the inflammation. That is the KEY, control the inflammation and be pain free! Good luck. 🙂
jeannae68307 patti52108
Edited
Patti,
I used methylprednisolone for 5.5 years and almost died while using it. I developed many complications. No doc would listen and i moved to another state hoping to find new and better doctors. One day a doctor in my new state said that i had a window of opportunity to try to titrate down and get off the steroid. I began the long and difficult journey dropping dose ever so slowly. It took me the better part of a year. Like you, I was on 3 mg and stuck. I used Dead Slow, Almost Stop method from the UK. Although the pain was horrific in titrating down, I am finally off it and ever grateful. i still have significant pain and am using other peer reviewed herbs such as curcumin to help with the pain. Although helping some, it does not give me the relief that i had with the pred,but it is worth it for me to avoid the deadly complications i faced. i have avascular necrosis, and had adrenal insufficiency and many other complications from the pred. will never do again. i hope this helps you. This is a tough and lonely journey and there is strength in numbers. Stay strong and you will get off it if this is your desire. i, like you, have severe pain every minute of every day and have gone from extremely active to sedentary with pain but i will prevail and get this inflammation down. Hugs.
Jen
Anhaga jeannae68307
Posted
Actually different forms of pred seem to have different side effects. Perhaps you would have done better with prednisone or prednisolone, not the methylprednisolone? I only bring this up not to disagree with you that pred is a serious drug and can have serious side effects, but really to suggest to others reading this thread that there are alternatives. I think there's not much to choose between prednisone and prednisolone, except that the former has to be processed through the liver to make prednisolone, which could be an issue for some. But having followed a couple of forums for several years I have noted that some people react very badly to methylprednisolone, while others do fine on it, and maybe they didn't on predniso(lo)ne, and vice versa. Agreeing with your comment that we are all different. Anyone suffering serious side effects from one form should consult with doctor about trying one of the others.
Tinapoly1 jeannae68307
Posted
Have you & your doctor been monitoring your C Reactive Protein ,CRP, that shows how much inflammation you are dealing with since we not only are battling severe pain but we are at high risk for a heart attack or stroke with a high CRP from the internal inflammation ?What I would give to not have PMR/GCA because of all the bad side effects from Prednisone but at least I can walk with Prednisone & hopefully won't go blind, or have a heart attack or stroke & I have learned Prednisone is the only drug to help us . Best wishes on your herb supplement ? I wish we could all take that but I don't want to end up in a wheel chair from the excruciating pain.
EileenH Tinapoly1
Posted
The raised CRP in PMR is not an indication of a raised risk of heart disease. That is indicated by an increase at a low normal level below which they don't usually report a figure, it is a different lab estimation. And the CRP is the signal something is wrong - it isn't the cause.
Tinapoly1 EileenH
Posted
I realize the CRP is not the cause . Two of my doctors said I should not be alive since a normal CRP is 1 through 8 but mine was up to 128 which they said was off the charts showing severe internal inflammation & that can indicate inflammation in the arteries of the heart which could cause a heart attack. Even a CRP of 14 is bad which I haven't gotten to after 2+years but at least I am down to 15.8.
EileenH Tinapoly1
Posted
It depends what the cause is - one lady on the forum has a level that was way up in the hundreds - over 400 I think - after a hip replacement operation. If it is due to LVV or GCA then yes, it does mean you are at a somewhat higher risk of a heart attack or stroke but that reduces once you are being treated but persists for up to a year.
karenjaninaz Tinapoly1
Posted
My CRP when first diagnosed was 133.
ptolemy Tinapoly1
Edited
I was the person Eileen mentioned and had a CRP of 415 after a hip op. I had my regular blood check last week and my CRP is 48, the doctor had written SATISFACTORY against it. He has never mentioned I should not be alive.
EileenH ptolemy
Posted
I'm relieved to see you posting - you have been very quiet! I was imagining the worst!
Tinapoly1 EileenH
Posted
I remember you from so long ago . A hip replacement is pretty major surgery so maybe that is the norm after that surgery. I did ask my doctor why I have never gotten to the "normal" dose which is on the lab sheet at 1 to 8. I am down to 15.8 & he said you may never get into the normal range because I have so many other autoimmune diseases that cause inflammation .
shelagh1952 patti52108
Edited
I'm 68and have GCA and PMR since Nov 2019. I'm on 25mg prednisolone but lower to 20 tomorrow, i cant get lower than 20 when my flares go right up with the GCA so hoso cons put me on Tocilizumab alongside steriods. if your not getting it under control you need to see hosp Rheumatology to get a plan sorted by the professionals in their medical field. Not sure where you're based, I'm in UK so medical treatment may be very different here to where you are
good luck. x
rosemary83494 shelagh1952
Posted
My CRP level was 122 when I was first diagnosed with PMR , so like you way off the scale, and I could barely walk. However that was 3 years ago, and the last blood test was 13, so not too bad. I am hanging in there on 3 mg pred at the moment with just stiffness in my knees and hips, which wares off when I get walking.