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Polymyalgia Rheumatica Prednisone

By Guest | 96 posts, last post
Chris Smith, MD answered this What Are The Side Effects Of Low Dose Prednisone?
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grandmasandy

I too have been diagnose with PMR I am having side effects from the pred. my immune system is being attacked they say it could be from the PMR or the pred. my IGG is very low and today I had my first infusion to help with this has anyone else had this problem? I too have gained weight in my face/neck/head...I look like I am sick or very tired all the time..my eyes are puffy and just very tired looking...the doctor talked about getting my IGG back to normal because this could cause cancer of the lymp noids
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Guest Mary

I appreciate everyone posting their experiences here. I'm not good at keeping up with the forums, especially since being on the prednisone, but I just wanted to wish all of you the best and thank you for sharing your situations and solutions. It's been very helpful.

~ Guest Mary

 

 

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Donna

I've been on prednisone for 3 weeks. I'm now 3 days off & I can feel my pmr returning. Started with the side of knees one day (1st clue) now it's my hips. I'm seeing a rheumatolist in 4 days so I'm thinking he'll put me back on prednisone. I don't get why no one knows about this disease. I've found so much on the internet. But a friend had this before me & suggested I had it.
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rita

i have had polymyalga for 2 years and it is still giving me hell i have been up and down on steriods am now on 8mg at the moment and just longing to be able to come down and of them , i hate each day im so worn out i feel i have run a maraton i am now 75 and i am wondering if i will ever be with out it so i feel for all of you out there if you are suffering from it hope it will leave you all soon regards rita
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blue

I had a bout of Polymyalgia Rheumatica three years ago which after three consultants was eventually diagnosed and i was put on 30mg pred.  Its horrible.  The pain went but my Lord the side efffects were endless... hair loss, night sweats, moon face,leg cramps up two dress sizes, on and on, then the side effects would change with each reduction - swollen soles of feet, urticaria, baloon knees etc.  its been a very long process and I got stuck at 5mg.  I was referred to a brilliant Consultant who says (a) PMR can attack anyonne at any time but usually around the 50 years of age mark (im under by a few years) (b) it CAN come back at any time in your life but NOT always (c) its a viral infection and wont respond the antibiotics.  He has put me on Aziathoprine which is another rather severe anti inflamatory / immuno suppresant to support me off the Pred. then he will get me off the Aziathoprine which is easier to do.  This drug is not appropriate for everyone as it can have serious side effects and needs to be monitored weekly without fail.  Finished the pred three days ago and apart from being extremely tired all the time doing okay.  iF YOU ARE GIVEN PREDNISOLONE DONT ALLOW THE DOCTOR TO KEEP YOU ON A HIGH DOSE FOR A LONG TIME, listen to your body - with each batch of new side effects I found that the signal to take it down a notch, and the side effects subsided.  By all means work with your doc and check before you reduce but theyre busy folks and it doesnt hurt to take responsibility for yourself too.  Good luck to all out there with this horrendous complaint.  Bear with it because it is treatable. ps hair does grow back - bonus for me is I got wavy hair this time instead of straight?!? x

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erinsue

methotrexate along w/ prednisone ....
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Guest

how long did you have to be on the predisone?i did the start up packet, found the last 3 days it didnt work for me again, now i am on 10 a day, it seems to be working great for me, how long did your pmr last? hopefully it has run its course in you, thank you, erin
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Guest

I was diagnosed with PMR 5 months ago and went on Prednisone. After a week or so the shoulder pain and stiffness of the arms and legs went away. Now with the gradual decrease of the prednisone, the symptoms are gradually returning. Problem is , the regular doctor visits and lab results indicate the SED rates and other indicators of PMR are not elevated any longer so the doctor is convinced the PMR is gone, but the symptoms are coming back. Has anyone heard of the symptoms continuing without the blood tests supporting PMR?
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honeybear

I have had PMR for 4 years and have been on 3 rounds of prednisone of about a year each. I went off the last time in September 2011. The SED rate was never high after the first time, but the symptoms always come back. I can be down to 1 mg of pred and it will keep the symptoms at bay. As soon as I go off, they return. I have gained about 40 pounds or more, so I definitely do not want to go back on. Now, I am trying to control the pain with a pain killer that I was on before I was actually diagnosed, Tramodol (50mg). At present, I can control the pain with 1 and 1/2 pills a day. It is not addictive although your body can develop a dependency, which means you need to go off slowly and at times you can feel out of sorts. I do not know how this will work in the long run, but my Dr. is supportive and it is less damaging than the prednizone. Let's face it. This disease may go into remission, but there is no cure. Prednisone does not cure it, so some of us will either be on prednisone the rest of our lives or we will learn to live with the pain. The pain does lessen. Sometimes it is worse that other times. I'll let you know if this works.
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Ann

I am the same age as you and have had PMR for a year. I saw 3 doctors in 3 months then the forth guessed what I had. I started on 15 mg, and have droped 1mg a month. I am down to 3mg and the pain is coming back. So I will stay on 3mg until pain goes or go up to 4mg with doctors permission.
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JoAnne

I have this PMR and have seen Dr. Andrew Dickens, Scottsdale, AZ. who has found some documentation that it is caused by some tooth problems. I have always had healthy dentition and do not recall any tooth infections, etc. This is another opinion to add to the list. I was told by my regular doc that it is caused by prolonged stress. My husband was very ill for 3 yrs staying at home,. and died. It was stressful.
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snowey

i understand your my husbaad was ill for 7 years with multipul scalroses he died at 62 and every thing started to go wroung with me rita laight
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sandy

I had polymyalgia rheumatica in 2003 and took prednisone. Had PMR for 3 years. The prednisone did a number on my bones and now I have osteoporosis. My PMR came back last week. I don't want to take the prednisone, though I know it will take away the pain. I'm going to try diet and exercise.
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rita

please let me know how you get on with the diet and exercise 
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grandmasandy

I have had all kinds of side effects from prednisone and was told today that I have cateracts because of the drug..I am now down to 9mg. plus I take methotrexate ( a shot every sunday)...I still have some bad days where the pain is bad and I have to take my pain med's the doctor also has been on some nerve pill to help the pain in legs....it has been over a year and I am hoping this disease will burn it self out soon...yes I have heard where it comes back....nasty business...good luck to everyone who has this.
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