July 26, 2019 at 1:41 pm #47457
Diagnosed with MDS MLD in June 2016. I have been on watch and wait since with relatively stable cbc results–
mild anemia (12 hgb), normal platelets, low wbc (1 to 1.7) and low ANC (.2 to .6)
Blood work on 7/22/19– 10.7 hgb—228 platelets—1.53 wbc and .45 ANC. Also on 7/22/19 diagnosed with Polymyalgia Rheumatica PMR. Severe muscle, tendon, and joint stiffness. Prescribed 15mg of prednisone daily and relief from stiffness and soreness after 3 days is remarkable. Likely will be on prednisone for 1 yr or more.
Anyone on here have experience with PMR? Advice and/or experience is welcomed.
ThanksAugust 2, 2019 at 11:55 am #47501DonnaParticipant
I also have MDS MLD and have recent aches in my legs and arms, sometimes my shoulders seem involved, worse during the night and when I first get up on the morning. It is the tops of my arms and tops of my legs, above elbows and knees. I have been on daily antibiotics and my NP took me off it to see if that might have been causing the new aches. Personally, I looked it up and don’t see it as a side effect but I do see it for MDS itself or from the chemo I get….Dacogen IV 5 days in a row every 4 weeks. I have had 3 cycles so far and these symptoms seemed to start around the time of the 2nd cycle. Joint stiffness is involved but for me it doesn’t have a name yet. I had to keep adding diagnoses. I have had platelet (2) and RBC (1) transfusions. My last labs after transfusions:platelets were 14,000 (8000 before transfusion), RBC 2.81; Hemoglobin 8.7; ANC .2; WBC .9. Are you at a Center for Excellence?
DonnaAugust 2, 2019 at 9:48 pm #47505
Yes to C of E but. I have yet discussed Polymyalgia with my expert. I am seeing local hematologist in a week and after that discussion will reach out to my expert.
The prednisone (steroid treatment) has totally relieved by pain issues but how it’s use impacts my MDS is the next natural response.
Be wellAugust 3, 2019 at 6:26 am #47506DonnaParticipant
Michael….I have osteoporosis and was told to never have steroids. Do they use Lyrica for that? Are you worse in the morning? DonnaAugust 3, 2019 at 7:37 pm #47511
A halmark of Polymyalgia is joint and muscle pain which is most severe in the morning. It is an autoimmune disease and the standard treatment is prednisone. I think lyrica is used for fibromyalgia which is not an autoimmune disease but related to central nervous system.
Quite frankly I’m not happy to take steroids but the pain relief is remarkable. It restored quality of life. My reasearch tells me that the prednisone will increase my wbc and neuts which have been always very low since mds diagnosis. Yes there is concern about osteoporosis but I have been taking vit d daily for years. Also I get a good exposure to sunlight as I play golf 4 times per week ( something I couldn’t do in the 3 weeks prior to PMR diagnosis).
I’ll have long discussion at my next hemo appt in 10 days.
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