PMR and Enbrel | Arthritis Information

I am new to this message board, but have been diagnosed with PMR since April 2006; I am 53 years old and according to my rheumatologist I have a very aggresive case of PMR. I have been trying to reduce the prednisone for months, and have had 3 relapses in the last 6 months. I am having difficulty getting below the 7-8 mg per day dosage of prednisone after a full year. My rheumatologist has put me on Arava and has now suggested the additional medicine Enbrel.

Has anyone had any results from being on Enbrel in trying to reduce the prednisone dosage. I cannot find any information on this medicine as treatment for PMR, and am not sure if I need to get a second opinion on treatment for PMR. I so want to get off the prednisone and have not seen or read any information on enbrel in conjuction with PMR. Any help would be greatly appreciated.

Marla

Marla - I suffer from PMR and Sero Negative RA. I'm not on Enbrel myself, but the meds for both these diseases seem to be pretty much the same in a lot of cases.

I know that lots of people that post to the Rheumatoid Arthritis Forum are on Enbrel, and you may get some answers on there. I have had difficulty getting my pred down below 8mg - have tried twice now, both times with not good results, so back up I had to go Got down from the higher dosages without probs, but I believe as the dose gets lower, it becomes harder and harder. Really important to taper slowly as well, even if it has to be 1/2 mg at a time, alternate days, for a couple of weeks, then drop another 1/2 for another couple. I'm sure though that your Rheumatologist has been through that with you. It's a tough one to get off!

Marla there is also a special Enbrel Board - that might be a good place as well. Get to it from the same page as the Introductions.

If you don't get any answers on here, there, or want more, try your post on the RA board - it's a very busy board and the people on there are very helpful.

Take Care Kiwilass239187.172650463

Jeanne:

Thank you very much for your response. I will take your advice.

Marla

Marla...1 year is not long. PMR normally last between 2-5 years (I had it for 2 years) so I am not surprised you cannot get below 8mg yet . Try 8 for a mont and than 7.5 for a month and than 7 etc for a month. This tapering is an awfully slow process. I know we all want to get off this awfull drug but we also need to be able to function...

I do not think Enbrel is meant for PMR.

Yes really slow. I had cut back to 3/4 of a 10mg. for just a week and had pains returning.

If you don't do it right now only could you have a flare but I would think you might not know the difference between it and the affects of withdrawal. They can be bad and similar.

~Kewanee

Well, my doctor put me on Enbrel. I had to go back up on the prednisone because of severe pain in shoulders/arms. Yesterday I did my first injection, so we will see. My dr said it might take a couple of weeks to a few months to see the full advantages of the medicine. I know that it is usually prescribed for moderate to severe RA, but my Dr. thinks it may help me get off prednisone since I could not tolerate the methotrexate and am having such a difficult time reducing the amount of prednisone below 9-10 mgs. He was very helpful in getting the insurance coverage on the meds which is very expensive if you don't have insurance prescription covereage.

I will keep you posted on how it goes with Enbrel! Maybe this is a drug that will really help PMR sufferers also!

Marla

Marla,
You are sort of fitting the criteria I've read about for getting Enbrel.
I look at other boards such for AS and it is not an automatic thing to get on Enbrel as it's very expensive.

I've read they start you on Methotrate first and if it does not do it or you can't tolerate it then they try Remicade and Enbrel is the frosting.

Most people I've read that do get the Enbrel the others have not helped. A few thought Remicade did help them better but many saw with AS that get on it say they have relief for the first time.

It can take a little while to work at it's peak but I don't remember how long. Incidentally, AS is anklylosing spondylosis and very painful. It results in a fusing of the spine caused by inflammation. Painful and can be disfiguring in that it can cause a stooped position.

I'm really interested to see if Enbrel will help and undoubtedly so is your Doctor. If he got that med for you it's only wonderful as it's hard to get the insurance companies to agree to it.

I sure hope it helps you and if it does, maybe others with PMR can get it too.

I hope anybody else that has had it and given a good trial will post. I don't remember of seeing anybody with PMR say they've had it.

Here is hoping and best wishes to you.

~Kewanee

I live 125 miles from my rheumatologist. I got a call yesterday from her nurse that said my liver enzymes are still elevated and asked if the doctor had talked to me about Enbrel. I said that we had not visited about it.

I remembered reading about it here, so I looked on the internet at Drugstore.com and found a figure of 0.00

Since I don't have prescription coverage, this will would not be an answer. I do have health insurance that I pay for myself. According to a lot of income guidelines, I fit into a lot of programs for reduced prescriptions. My eye doctor gets my medicine for my glaucoma and I get Methotrexate from St. Louis through a drug program.

I found a program by Wyeth and called to talk to them. They said the cost was more like 00 a month! However, since I have health insurance, I can't be covered by their program.

When I was laid off in 2002 I bought my private health care coverage and there are only two companies that write NEW business n my state....and neither of them would sell prescription coverage.

Reading more now, some have not had good luck with it.

My question is, how often do you get the injection? Not that I can do it, just curious.

Starbright:

I give myself an injection once a week and so far it has not been bad--no site reactions so far. I have only had 2 injections, but I can already tell that the pain in my shoulders is better. I am so sad that you do not have prescription insurance coverage. My rheumatlogist did the leg work to get the prescription covered by my health/prescription insurance, then they gave me a number to call and get help with the monthly copay which is a month. There should be some programs that would help pay the majority of this prescription! It does not seem fair that there would be a medicine that could help folks, but that it is too expensive to buy! My prayers are with you.

Marla

Thank you Marla,

I wondered how often you would do the injection. I don't think I would have a problem with doing that. The price though at ,800 if you took it for a year is just not possible. The nurse did say today they would try to find some other means...or try a different medicine.

My liver blood tests have not been good and I am Methotrexate and 1mg of prednisone. The last time she gave me the schedule for prednisone was to end a couple days before I would see her. She then said when I was off prednisone, she said we'd see if I could be weaned off of Methotrexate. Evidently I will need to take something besides Methotrexate.

It is too bad that our country's health care system depends on whether you have a job that will provide health care for you. I was laid off at age 58 and I do not live in an industrialized part of the country that provides insurance. I worked in an office my entire life, and there was definitely no place like that. I could work at an office now, but I would not be able to do anything physical. So if I had done that route, maybe I would qualify for disability and maybe they would have had to keep me on the insurance rolls.

Again,thank you. I'll keep everyone posted as to what prescription they will suggest. I will look into the other one mentioned, but I imagine it is just as expensive. Mary