Hi Everyone, Hope all are well and surviving the Christmas season with GCA or PMR. Haven't posted in awhile, have been working/sev.projects

[Whittlesey]

Have had some problems with the dissecting cartoid arteries. Having scans every three months. No stent yet. Hip surgery, February. Found a good rheumatologist at NYU Medical. Understands this and that I don't want high doses of steroids, keep them lowered as possible. Of course make sure my eye sight stays intact.

Just before Christmas, early in the morning, I could hardly get out of bed. Left arm, neck and some right arm pain. Muscular pain. Very bad. Could not raise my right arm above my head, nor barely use it all, without very bad pain.

Got through Christmas.

Have not as yet talked to my rheumatologist, yet.

It may be PMR. ?

So, I have these in reverse. Usually it seems, people get PMR, first, then GCA.

May have to increase steroids. Am down to one gram a day. Sometimes I skip on day a week, with no negative consequences. May have to go back up to 15.

Wondering if any of the new treatments, for GCA work for PMR, also. If I have it.

Believe this may be PMR.

Appreciate civilized comments.

Thanks.

best to all, and Merry Christmas, Whittlesey

[PMRpro Ambassador]

I've already answered the other post you made. I don't think it is possible to say one comes before the other. It is also possible this isn't PMR - myofascial pain syndrome is also a possibility. You could have a neck problem which is causing referred pain to radiate into the arms.

There are no "new treatments" for GCA. There are a few substances which are possibly being trialed but there are no results from clinical trials as yet, nor likely to be for some time. There are major ethical problems with regard to GCA - when it is known that pred is highly successful in avoiding loss of vision you cannot put patients onto another untested, unproven treatment, it must be combined with use of pred.

There are substances being trialed as "steroid sparers" in PMR but as yet I have heard of nothing that is proving 100% effective and 100% side effect-free. Leflunomide looked promising but I know at least 2 people who started on it with good results but who have had to stop because of life-threatening side effects. Whatever we feel about pred - that rarely happens.

"Sometimes I skip on day a week, with no negative consequences" - if you possibly have developed PMR then I don't see how you can say that. I have come across several ladies who were down to similar low doses and who took the first step to stop altogether on the grounds it was such a low dose it must be possible to stop. Within a couple of months PMR symptoms resurfaced.

[Whittlesey in reply to PMRpro]

Hi PMRPro,

Yes, understand what you are saying.

Would say that I am interested in the treatments. and I understand ethical considerations --- truly do.

Yet, the negative effects of prednisone -- and I have never studied what prednisone actually does in the body. It produces a good outcome at first, but after you are at risk, for --- -- non function of organs.

In working with disabled advocacy, I have met a disabled woman in a wheelchair to whom, that happened. She was rushed to the hospital and prednisone was the answer. She is now on low doses.

Seems to me (layman) that pred covers a lot of bodily "misfunctions" (for want of a better word) and there may be a specific "something" that deals with enlarged macrophages and IL 6 inflammation in the blood. Lowers that effect. Then we don't have to deal with the negative effects of pred, which in the short and long term, can be fairly severe.

I am still using the pred and the dosge information, which is very good and I have shared it. Will try to get it more published in the U.S. It needs to be. All of this is so difficult, with the potential for real dysfunctions.

Yes, the trial medications can cause very negative side effects, including, well passing away, if not managed well.

And at this point, I wouldn't advocate trying them if you are in the middle or beginning of GCA.

Thanks on the myo fascial --- will go into that with my doctor. I was having jaw pain and upper cheek pain during the worst of it. It is better now, (with no extra pred), but I feel like not much could make it come back. And that was --- whew -- I need to use my arms. If I need more pred., will use it. Not looking forward to it.

Thanks

Have a Good New Year. Hope you are going somewhere nice.

We are having a warm New York, New Year.

all my best to you, Whittlesey

[PMRpro Ambassador in reply to Whittlesey]

I think you misunderstood what I meant about ethical considerations. There are no totally new drugs being trialed so they have already been through the safety stuff. It is whether they could be relied on to prevent a patient going blind.

Using high dose pred in GCA is known to be pretty good at preventing patients going blind. That is the query with other drugs - will it work. Personally, whatever pred does to me, I regard it as preferable to going blind. That is the risk of using a drug you don't know will work for GCA - totally different matter with PMR which is not life or vision-threatening unless it progresses to GCA.

I'm going nowhere for New Year - I live in a valley where thousands come from all over Europe for THEIR New Year! It is very nice - and is now looking very Christmassy (a bit late) as it has been snowing lightly all afternoon. I shall have my dinner and probably go to bed unless a neighbour invites us round. And my husband will wake me at midnight for a glass of prosecco - because there is no chance of sleeping through Italian celebrations anyway!

Belated best wishes for Christmas (or whatever you celebrate) and for 2015!

[Whittlesey in reply to PMRpro]

I actually do understand the ethical considerations. And am glad they are being made.

To me, it is like the Syphillis Experiements in the U.S. A Department of Health in Alabama and other southern states, thought it was "o.k." to experiment on some black male sharecroppers, who had syphillis. They didn't give them the life saving drug of penicillin, when it was developed, because they wanted to "see" how the disease progressed. When this unethical and actually illegal activity was exposed, our country was shocked. They later sued all parties and received a judgement of $3 million or more, I think. I have studied the case.

So I am aware of ethical considerations in medicine. Glad they are being made on this disease.

yes, allowing someone to go blind to test a medication, should never, be accepted. Glad it isn't.

And I understand the difficulties this present.

The trial medications I have seen seemed mainly to try to stop the growth of killer T cells, slow the inflammation in IL 6 and stop the macrophage enlargement (or "giant" macrophages --- as per the name).

This seems a good idea. Often it is used along with pred, it seems. And carefully monitored.

And again, the problem is that the immunity if lowered, which may already be lowered with the dosages of pred.

Some may help. Bares looking into, it seems.

Part of my heritage, is Italian and there are times at Christmas time, when I would love to be in Italy. New York is pretty active, but not in that way.

Glad you are having an "interesting" Christmas, if it is that to you.

Hopefully at some time I can travel to Italy.

I actually work with a non-profit on ethical considerations and violations made in both medicine and politics. Possibly I can get to Italy.

Have a good holiday.

Buona Natale

(remembered greeting at Christmas time).

Whittlesey