Not sure 🤔

[Rocketronzy]

Wakes me up early morning sweating profusely pain and dicum and red in face aroud eyes and stinging a little. Sometimes pains in chest. Pains in the legs. After prednisone fine the rest of the day.

Also fine when go to doctors. 😖

[Soosie16-USA]

My mom found PMR relief with prednisone and was on it long time. I would not recommend long term therapy after watching her have bad, long term effects even though it worked on her pain. Please try for the shortest dose possible and follow up on any other relief options.

Good Luck!!!!

[piglette in reply to Soosie16-USA]

Soosie it is really not up to the person with PMR to decide how long to be on prednisone, it is the PMR that dictates what happens, some people have remission in two years while others have to wait much longer. Pred is the only medication that really helps the PMR inflammation. I think most people would say that they would prefer the pred to putting up with the excruciating pain in spite of the pred side effects. People also have to consider the loss of sight by not taking the steroids.

[Soosie16-USA in reply to piglette]

I know you are right as I have seen it first hand. I just pray that some day there will be another option. I have used the pred dose packs, but only as a last resort and, luckily, have never had to finish the whole pack. My mom definitely chose to stay on prednisone for the pain relief. She was so dismayed by the side effects and that hurt all of us who loved her so I know I am prejudiced....but, I also would urge her to stay on the prednisone regimen for the relief it provided.

A doctor is always the first and last word regarding treatment on the progression of PMR. I pray that all quickly get long lasting relief from their PMR symptoms. I didn't know there was such a disease until Mom dealt with it and I feel that it is in my future as well.

[piglette in reply to Soosie16-USA]

Soosie, remember you were not taking steroids for PMR or GCA. They can just usually be stopped short term for other illnesses, but not for PMR and GCA where they are taken long term. Moon face is a pretty common side effect of pred. Recommending people take pred for the shortest time possible is wrong of you, the disease makes that decision.

[Soosie16-USA in reply to piglette]

Totally agree with you - dr. recommendations should be followed at all times.

[piglette in reply to Soosie16-USA]

Hi Soosie, I am not sure I totally agree with you. My doctor prescribed me some fairly strong anti inflammatories recently which are contra indicative with steroids and could have caused nasty stomach problems. I pointed it out to her and she changed the prescription. I think a lot of people on this discussion board have had disagreements with their doctor on tapering steroids, Alendronic Acid, methotrexate and probably dozens of other things. In some cases the doctor obviously had very little knowledge PMR or GCA. I think it is important to question a doctor's recommendation if you are not sure about it. Doctors make mistakes too.

[Soosie16-USA in reply to piglette]

Unfortunately, too true. But, as a general rule, a good starting place for a discussion. I have had my pharmacist question a prescription from a dr. as it would counteract with another. I guess it really does take teamwork to get the best plan in place and each of us could be the best advocate we have for ourselves. As I have mentioned before, my experience with PMR and GCA are from my mom's illness so my perspective also gets wrapped up in my emotions ... so my best course of action is to withdraw from any discussion about pred or treatments. Take good care. And best wishes.

[piglette in reply to Soosie16-USA]

Hi Soosie, I have a friend who is a pharmacist and she says she has an amazing amount of prescriptions that are a bit iffy. My local pharmacist spends a lot of time checking through individual's total medication to see if it can be reduced or improved. She says she has come across people on forty different drugs. I wonder if they were taking them all!

[PMRpro Ambassador in reply to Soosie16-USA]

I'll agree to differ there then - there are many times that a discussion with a doctor over their recommendations may save a lot of heartache. As piglette says there have been some very strange ideas expressed re PMR and pred.

[Amkoffee in reply to Soosie16-USA]

I am concerned that you said you have stopped your prednisone packs early. Please don't do that. It is very dangerous to just stop it. You must taper off. That's why the packs are set up the way they are with you taking a smaller dose every day.

[PMRpro Ambassador in reply to Soosie16-USA]

There are few (for that read no) other relief options as you put it as yet. PMR is a long term condition and if you wish to be mobile and reasonably pain-free you need the lowest dose of pred that gives you that. And all of us are aiming for the shortest duration of treatment - but it doesn't work that way! You need what you need.

Steroids may have unpleasant side effects but actually most of them can be fairly well managed when you know how. I have been on pred for 8 years, I have had side effects but all of them are now gone. Without pred I was in constant pain and almost immobile and even the really unpleasant side effects I had never made me feel it was not worth taking.

It isn't a case of pred bad, no pred good, of black and white. Without the pred there is rampant unmanaged inflammation present in the body - and that makes it more likely you might develop other illnesses in the long term. Such as peripheral vascular disease and some cancers. If taking pred reduces the risk of them - that's fine by me. And for anyone with GCA they need high doses and potentially for some time - or risk going irreversibly blind.

[Soosie16-USA]

I know you are absolutely right. It just was so hard to see my mom suffer from the side effects as she was a long term user. We urged her to stay on pred for the pain relief it provided as she did fight us about it due to the body (facial) swelling and tooth decay. She also had GCA as well as PMR. I pray another option becomes available and know that your doctor's direction should be followed. I also hope that you are doing well and feeling great.

Best, best wishes, Susan

[Suetum in reply to Soosie16-USA]

Doctors do not feel the pain and many are inexperienced with GCA or PMR it is the patient who knows best most of the time. As the forum says symptoms trump bloods!

[Amkoffee]

Isn't that just the way is goes. Your always better when you get in to seeing your doctor.