Finally, weaning off prednisone after 15 years.

[phebamom]

I have not posted in a while. About 5 years ago my blood pressure went up (180/110). I was put on over 10 different blood pressure meds. Nothing took it down. Last November I was diagnosed, via kidney biopsy, with something called MGRS (monoclonal gammopathy of renal significance). The illness is related to MGUS (monoclonal gammopathy of undetermined significance) and to Multiple Myeloma. Via bone biopsy I was diagnosed with Multiple Myeloma and MGRS. I was taken off of Actemra for the GCA and had four rounds of chemotherapy followed by a stem cell transplant. I saw rheumatologist today and he advised trying to finally get off of the 5mg. prednisone. Rheum. told me that GCA often comes back (about 80% if the time). What science does not know is how often it comes back after a stem cell transplant. My entire immune system was wiped out. The stem cell transplant I had was my own stem cells Right now bone biopsy shows no cancer and no MGUS protein cells. The protein cells were attacking my kidneys causing the high blood pressure. My blood pressure is now normal. I do have kidney disease from the MGRS. So, as soon as I pick up the 1mg.pred pills I am to go down by 1/2 mg. per month. I am wondering what signs and symptoms to look out for. I have been through so much, and everything is either tender, sore of the source of neuropathy (feet) that it may be hard to tell. I am guessing that jaw claudication returning should be the one thing I should be keeping an eye on. It has been a long road to get to this place. I can not help but wonder what role the MGUS played in the Polymyalgia Rheumatica/GCA. I was diagnosed with MGUS 20 years ago and told it was harmless at that time. Science, specifically, a very broad study through Mayo clinic, shows that there are 16 different illnesses that are connected with MGUS. The MGUS has always made it challenging for the rheumatologist to treat because MGUS skews the SED rate test, usually making it appear higher than it really is. Does any one have both MGUS and either PMR or GCA? It would be interesting to know

[DorsetLady PMRGCAuk volunteer]

Can’t help with general questions - but certainly would be interested to know where this came from -

Rheum. told me that GCA often comes back (about 80% if the time)

[phebamom in reply to DorsetLady]

That is word for word what my rheumy told me yesterday. He wants to be super cautious with weaning me off prednisone. He is concerned the GCA will come back, The great unknown is what happened when my immune system/bone marrow was totally wiped out with the transplant. Like a computer, is my immune system re-booted without the GCA? My rheumatologist admitted that he just did not know. Science just does not know. We shall see I guess.

[DorsetLady PMRGCAuk volunteer in reply to phebamom]

Like PMRpro, think he’s probably meaning a flare when reducing too quickly because he thinks GCA lasts a lot shorter than it actually does. So not returning once in remission , so much as being uncontrolled whilst still very much alive and kicking.

[PMRpro Ambassador]

"Rheum. told me that GCA often comes back (about 80% if the time)"

Not in our experience. Though I wonder if he is in the "it only lasts 2 years" lobby and counts it as GCA "coming back" any time a patient reduces pred and it flares. In that case, it probably would look such a high rate.

However, while it is possible that the GCA could return despite the considerable therapies you have been through, I think that your greater problem is likely to be returning adrenal function and even 1/2mg per month may not be slow enough to match that.

There are a few people on the forum with MGUS, don't know about MGRS, and I think one or two with MM.

[phebamom in reply to PMRpro]

Hi: My rheumy is not one of those who believes GCA only lasts two years. He has been treating me for over a decade for GCA, using high doses of prednisone plus Actemra. I no longer feel like I have GCA, and it feels to me like it will not come back. But, considering everything I have been through, who knows. My rheumy is kind of opposite from most. I always argued to try to get off of prednisone. He always kept me on it. His exact words were that GCA comes back about 80% of the time. Of course that means 20% of the time it does not come back. With me it seemed to wax and wane for 20 years.

[PMRpro Ambassador in reply to phebamom]

Interesting that that is his experience - I truly only know a few people whose GCA has come back, He sounds a good guy though - need more of them.

[phebamom in reply to PMRpro]

I am wondering if the percentage on disease coming back is influenced by how long a person has the disease prior to diagnosis. In my case I was misdiagnosed for several years.

[PMRpro Ambassador in reply to phebamom]

Certainly doesn't seem to help the course of the disease. I wasn't diagnosed for 5 years - still have it 15 years later ...

[phebamom in reply to PMRpro]

Exactly. I was misdiagnosed for many years. I have been dealing with PMR/GCA for 20 years. I have had the Multiple Myeloma for a long time also. Good news is my latest bone scan showed no cancer. But I need maintenance chemo because Multiple Myeloma comes back. So now I have two illnesses that can come back. But who knows. I am 69. Perhaps the GCA and the Myeloma will never come back.

[Karenjaninaz]

I have PMR and MGUS. The latter was diagnosed when I first was treated for PMR. I’ve seen the hemotologist oncologist a couple of times and was never told to come back. I’m coming back on my own next week, after five years, because I’m 82 and who knows. I don’t have symptoms.