My question is: has anyone experienced an increase in Sed Rate while taking Predisone for a long period of time? I was diagnoised with PMR June 1, 2006. At that time my Sed Rate was 85. The rhuemy put me on 45 mg of Predisone for three weeks. My sed rate dropped a lot. So he lowered the Pred dosage. Over time my sed rate appeared to settle down at 31,31,32, and 31 (Jan 08, Nov, Sept, July, May 07). Then in May 08, my sed rate had jumpped up to 52. I have been taking 15 mg Pred since Nov. 07. I don't know whether this is a normal setback or something else.
Has anyone else had this same kind of experience? Any imput will be appreciated.I also had a increased sed rate of 58 while I was on 15mg of Predisone. I was also diagnoised. in 2006. Mine increased after a year. They wanted to put me on methotrexate
but I refused.
How are your symptons? My shoulders were bad with the increased sed rate.
I still continued to drop dosages of Predisone.
My sed is now 39 and I am on 1/2 mg of Pred.
Shoulders still hurt. Not as bad. But I am ready to get off of Pred.
S
Thanks Susan for your imput. I still have pain in my shoulders and lower back.
I hope I will be able to get the sed rate down some without much of a raise in the
dose of Pred I am taking now. I'd like to get off Pred too.
I hope you are able to get off of it very soon. Hope you have a pain free day.
Mariellen
I wonder what every one's SED rate is. I went in for a checkup last week and they did a blood test and it is now 25 and listed as normal. When I was first diagnoised, my SED rate was 54 and I couldn't get out of bed and my knees wouldn't bend and I couldn't lift my arms above my shoulders. I see some have SED rate higher than that now.
My hips and sacroiliac joints still hurt. I have been off of Prednisone now for a year and have been taking aspirin and NSAIDs. I take according to the direction of the bottle. They did a kidney test too and it shows normal.
I am in month 22 of when it first started. I can't say as I think I am getting any better. At Christmas time I thought I was over it. In fact I woke up three mornings in a row without any pain. Then after taking Prednisone for 10 days in case I had GSA, I started to hurt again and now I still I wake up in the morning with my whole body hurting. I had to quit taking Prednisone and Methotrexate last year.
I'm wondering that if the chart says my SED rate is normal....have I now turned up with arthritis or rheumatism.
It would be interesting for everyone to post their SED rate to see just where we are at on this process. Mary
Mary - i got off pred in January 08 ready or not - was diagnosed oct 07. I got worse then slowly got better and the pain left me. But I still have the stiffness like you have. My last blood test a month or so ago showed my sed rate was normal. I dont take any meds now - just tons of supplements. I worry also about the leftovers. My rhumy told me most people have some problem or another from now on - comes and goes. I feel so blessed to have the unbearable pain gone but my life is not as it was with this stiffness. I am not sure what to take for this stiffness. I am hoping that there are people out there that are normal after this and are just going on with their lives and are not looking at this site anymore.It is so strange. I will take naperson for awhile and in a few days it quits working. Then I go aspirin and it works. Then it quits. I got some ibuprofen the day before yesterday and it really worked well. I suppose in a few days it will quit working. My kidney test said it was normal. I follow the directions on the bottles exactly and stated. My rhumy said I wouldn't run into too much trouble if I followed the instructions.
I have been wondering if PMR is gone and now I have the after effects. For three days after Christmas though I woke up without a pain in my body. It was so unbelievable. I laid in bed until 11 a.m. just glorfing in the whole thing, rolling over and not hurting. I wished it would return.
The funny part is now, I really really sweat. I never used to sweat and now after just mowing the yard, it was dripping from my ears and chin and it is only 69 degrees outside. So if it is gone, it has done something different to my body.
We do sound like we are at the same place with PMR. No prescription drugs, but we still hurt and life has sort of changed. Mary
I sweat at night - Sometimes in the morning i have to change my pjs...or sometimes if i get up to use the bathroom i have to change them. (I usually am in my ps for most of the day if i stay in). There are some standards for ruling that pmr is gone - seems like i remember seeing something like that on the internet. IF i find it again i will post it. I think if we are suseptable to this we are probaly suseptable to other junk.My sed rate when diagnosed was 80. I was unable to move my shoulders, pelvis and back were killing me. I could not lift my legs out of the car. I was started on 12mg of Medrol, and then dropped down. Sed rate hovered in the 50's. It's been bouncing up and down as the dosage of Medrol is either increased or decreased depending on my symptom's and level of pain. In January it was normal at 10mg. Now down to 6.5 mg of Medrol. I'm having my sed rate checked at the end of this month. I still ache, but not like the beginning. So, I guess that is progress. My left foot is killing me inspite of three injections.
Guess I will have to see where this will lead. Sixteen months and counting.
It is interesting to see the different levels of CED rate. With mine being at 25 and being listed as normal, I wonder what the range is for normal.
I'll do a Google to see if I can find out about PMR going away. By lower backs still hurts and to get into the bathtub I have to put my back against the wall and scoot my feet down the tub until I can sit down. I can't get out of it like I used to. And, I am hard pressed to really remember how I used to get out. Now I have to turn on my side and get on my hands and knees and then I can stand up.
I can get in bed like I used to. The funny part of that is, I didn't remember how to get into bed. But as I got better, the reflex came back. It is something you don't think about. Some people sit on the bed and then lift up their legs....I put my knee on the bed and then scooch around. I'm thinking when I am completely better I will remember how to get out of the tub. I'm beginning to think I tucked my knees under me and then raised up.
Strange....one wouldn't think it affected your mind, but it did affect my subconscious reflexes. Mary
SED rate and ESR levels.
These differ from person to person and also depend on your age. What is 'normal' for one is not for another.
Remember there is 'no known cause or cure' medicines are just alleviating the symptoms. That is why research into cause and cure and a gold standard diagnostic procedure is desparately needed. Look at the NMR Foundation site in the USA and pmr-gca.co.uk in the UK
Come - we need to push for research whilst battling with these illnesses.
mrs UK
wow - you take baths! I have not dared to even try since last october. I understand completely about forgeting how to use your body. I have had to learn to sleep on my back and not moving since october. Just in the last months i have been able to move about a bit and even turn on my side for short periods of time. But i do have trouble figureing out how to turn over. The most normal i ever feel is when i am in the pool. I go to a place that has a hot therapy pool and that is awesome. I spend hours in there. I had the worst time figuring out how to get in and then when in, how to get back out. The warm/hot water though felt so good. When the tub was empty, I would put my back up against the back wall and then walk my feet down the tub (on the rough stabilizers) and slide down in. Getting out, would turn on my side and get up on my hands and knees and could them use the side of the tub to raise myself. (ouch for the arms) Last week I remembered how I used to do it and tried it...worked sort of well, but still I don't want to try it too often. I don't want to slip. I used to get into the tub and then bend my knees and then put out one leg and then the other. My mind would not tell me how to do it until I was well enough. It is the strangest thing.
By the time I got my hair washed, the water was up high enough and I could lay down to my shoulders and it is as if my brain heaves a sigh of relief.
Sleeping is getting better. I can't imagine not moving though like you said you had to. I must move a lot, because I would always wake up. I'd have to use my arms to lift myself to turn. The fact is, they did not start to hurt until about a month after my hips and knees started to hurt. I really think if I had not used them like that, they would not have hurt.
I think that we use our muscles and exert them and they don't heal because our adrenal gland doesn't put out enough stuff to help.
I am just on NSAIDs too, I only try to take something every 12 hours so as to not over work my kidneys. Mary
Its amazing how men experience PMR differently to women and seem to get down much more quickly and also not to suffer many of the side effects from co-costeroids.
I know the ratio of men to women contracting PMR is low (100 pmr sufferers - women 97 men 3) or so I am lead to believe. And I do not seem to have come across a man with GCA.
It will be interesting to see the results of the international survey.
In the meantime Miken, for the first time in my life, I am beginning to wish I was a man!!
Good Health and Good wishes.
mrs UK
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