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.

[Lindilooo]

I've been unwell for 10 year. Back and forth to the Dr's complaining of severe fatigue and joint pains. 6 years ago a Rhuemtologist diagnosed me with fibromyalgia, this was the worst thing that could have happened as everytime I visited the Dr's following that diagnosis, everything was put down to fibromyalgia, actually I felt like they thought I was a hypochondriac.3 years ago and still suffering, my joint pains changed, I couldn't dress myself due to awful pain in my shoulders and couldn't get in or out of my car due to immense hip pain.

The Dr's again fobbed me off with fibromyalgia, even a Rhuemtology 2nd opinion did the same.

1 year later, after suffering what I now know was PMR, I nearly lost my sight to GCA.

I've been on prednisilone for 2 years now, as I struggled to taper, symptoms returning, methotrexate was added.

3 months ago I noticed my bloodwork was coming back showing hyperviscosity, it was increasing each blood test. I asked my GP why the sudden change, as my GCA was controlled. They told me that this was common in autoimmune conditions. I wasn't happy with that, so approached Rhuemtology with the same question, they agreed with my GP but said they'd run further bloodwork.

They found MGUS, IgM Lambda, paraprotiens 8.6 on diagnosis.

I feel I've had MGUS for many years, going back to when my health started to deteriorate.

My 2nd blood tests are tomorrow, I suspect the level will increase, and I will be referred to haematology.

I'm predisposed to Waldenstroms, which is a rare type of lymphoma, due to my MGUS type.

Goodness knows what the future holds, I'm 62 now, and all of this started when I was 50.

My advice to anyone, with regard to any health concerns, is don't be fobbed off, I'm in the UK, so I am at the mercy of the NHS, I've received some excellent care, but I've also had to fight for some of that, it shouldn't be the case.

[phebamom in reply to Lindilooo]

We have to be our own advocate. The reason my cancer was finally diagnosed was that I asked my oncologist for a simple urine test. The test came back with blood and protein in my urine. I deeply feel that the MGUS is the root cause of all of my auto-immune issues. The protein just had to get bad enough and turn to multiple myeloma and kidney destruction for doctors to figure it out. I have excellent doctors caring for me now. In the past I have been hurt by truly horrible doctors. One, several years ago, even wrote 4F on my chart; fat, female, fecund, over 40. Thank goodness those days are behind me. You have my sympathy. A paraprotein level of 8.6 is high. They need to keep an eye on that. The type of paraprotein I have is a little different, but at 10% it becomes Multiple Myeloma. When they did my bone biopsy they did a test called a FISH study. The test showed I have bent, missing, mismatched, crooked, cock-a-mamie chromosomes. One doctor said I was born that way, another said I picked up the messed up chromosomes in my travels in life. I think it is a bit of both. For over 20 years my paraprotein level never went above 3, but was still high enough to wreak havoc with my health. I am age 69, and an amazed at how well I made it through the stem cell process. It is amazing what can be done these days. I have neuropathy in my feet, my hair is growing back slowly, and I tire easily. Other than that I am okay. Okay, I may take some heat for this statement. I don't believe fibromyalgia is a distinct diagnosis. I believe from my experience that fibromyalgia is a symptom of a more serious underlying auto-immune illness. Fibromyalgia is a latin word meaning: "damned if I know what is wrong with you, but you are a middle age woman past menopause, so lets say Fibromyalgia." Unfortunately, once the label gets stuck on you, it is hard for doctors to see past it. Hang in there, and keep fighting for answers. I was diagnosed with fibromyalgia 4 times.

[PMRpro Ambassador in reply to phebamom]

Even the guy who first described the dx fibromyalgia said he wished he never had. It has been so abused as a get-out.