Stopping Actemra

[phebamom]

Good day all: Well, I called and canceled my Actemra infusion for today. I was recently diagnosed with something called MGRS (Monoclonal Gammopathy of renal Significance), It is related to Multiple Myeloma. I start chemotherapy for the MGRS next week, which is the same as the chemo for full Multiple Myeloma, which I do not have. High dose steroids are one of the drugs in the chemical cocktail I will be on plus a different biologic, a protease inhibitor and perhaps other drugs. So, the Actemra will just be too much. My bone marrow is making a protein that is destroying my kidneys. Kind of makes the PMR/GCA pale in comparison. I suffered with PMR for over 20 years, GCA for at least 12. Now, I can't help but wonder if having MGUS has been the base instigator in all of my health issues. I was diagnosed with MGUS over 18 years ago. While the condition is harmless most of the time, in me it seems to have caused a lot of problems. I will let you folks know how it goes.

[PMRpro Ambassador]

All the best - chemo is not the sort of thing you want in your Christmas stocking is it. Hope it isn't too bad though.

[Miserere]

I am so sorry to hear this; you do not, as they say, have your troubles to seek. Thinking of you and hoping your treatment goes well. Xxx

[Stills]

Sorry to hear of your story, please accept my heartfelt wishes for a better future

[powerwalk]

Good luck with your treatment. Best wishes. Let us know how you are doing.

[Megams]

~Sending special thoughts and abundant blessings your way at this time. May your days ahead be extra gentle where possible.

[Bridge31]

Gosh that’s a lot to deal with. I hope it all goes well for you.

[Wouldlovetorun]

Sending very best wishes to you 💐x

[Gimme]

Wishing you all the best for your treatment. 💗💗💗

[Missus835]

You are going through it. Wishing you all the best for this newest part of the journey. Positive vibes only!

[Elephants2019]

was so sorry to read your post regarding latest diagnosis. Will be keeping you in my thoughts-hoping this latest treatment works! Keep up the positive thoughts, know we are pulling for you, and happy holidays!

[phebamom]

I wonder who I pissed off in a past life to end up with this much bad Karma. The bone biopsy report states that I have extra damaged chromosomes making me high risk for a condition called "Double hit", which is fatal. CPap is causing so much harm that the sleep doctor is sending me to see a dentist for a mouthpiece instead of CPap. Blood pressure will not come down. So, cannot get cataract surgery until BP goes down. Vision blurry. I am somewhat at peace with the cancer diagnosis since I have felt something was very wrong for at least a year" At least now I know doctors are heading in the right direction. I have a fantastic oncologist and that alone is half the battle. There is no cure, but the overall survival has changed from 3 years just within the last decade to 10 plus years. I am age 69 now, so who knows. Never smoked, only drank a little wine, but have been struggling with major health issues for 20 years, about how long the MGUS has been showing up in blood work . This diagnosis and treatment may end up solving some problems and answering a lot of questions. The oncologist told me the chemotherapy for MM is very well tolerated. so, it's all good. Have a great and safe holiday. Will write again after I start chemo. I looked and could not find a support group for MM. the MGRS is so rare there will not be a group. MGRS as an extension of MGUS has only been a part of science since 2012. The odds of an MGUS patient getting MGRS is 1 percent. Boy, I beat the odds on that one. I am also being put in the queue for a stem cell transplant

[SheffieldJane]

Sending you all the good wishes for your recovery. 🌺

[Bella59]

Best wishes for a good recovery.

[Hunter134]

I hope your recovery is quick and you tolerate the chemo well.You really deserve a break 🌺

[MamaBeagle]

Hoping all goes well for jou, and that in the not so distant future you will feel better💗

[Luciejc]

You are in my thoughts and prayers for your condition to be stabilized. May you tolerate your treatment well and feel the love from all here.