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Posted By : Canaveral - 7/20/2017 7:51 AM
Hi everyone. My Mom has had RA for about ten years now. She got on a pretty good regimen that included low dose methotrexate and 5mg prednisone. Unfortunately about two years ago she stated getting low WBC count. She discontinued the methotrexate and her WBC came up, so they did not feel it necessary to to a bone marrow biopsy. She started on Plaquenil.

A few months ago her WBC came back dangerously low, a little over 1. She discontinued plaquenil and her WBC came up to 1.9. Her doctor recommended a bone marrow biopsy just in case.

Biopsy results are back. Her doctor told her she has myelodysplasia (or MDS) secondary to either the methotrexate or the plaquenil (or both). It's also known as preleukemia. It has a median survival rate of 2.5 years and a best case scenario of 5 years. Unfortunately, the kind of MDS my Mom has turns into Leukemia 100% of the time.

She asked if it is possible it could go away after the medications clear her system. Her doctor does not have any experience with MDS secondary to Methotrexate/ Plaquenil, so she said she does not know. This is new territory for her.

Does anyone have any experience with this? sad

Posted By : Canaveral - 7/28/2017 10:10 AM
No one?
28 years old
Female
Diagnosed UC Sept 2016
Current medications: Remicade, Symax Duotab

Past medications tried: Symax Duotab, Bentyl, Entocort, Asacol, Lialda, prednisone, fecal transplant

Posted By : straydog - 7/28/2017 12:43 PM
Canaveral, this is not a real active forum unfortunately. Did you try using the search box at the top to see if you could find anything in the archives? I hope things work out for your mom.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Indu - 8/7/2017 6:43 PM
Hi Canaveral, I'm sorry to learn about your mom's results. Hope things work out.

Posted By : 1 day at a time - 8/20/2017 7:20 PM
I am sorry your mom has MDS. I have a bit of personal experience with it. MDS is a rare and little known side effect of arthritis treatments. One side of my family all eventually end up with some form of MDS. The good news is at least one relative is in remission, so it is possible, although we are all individuals and not everyone reacts the same. MDS is considered to be pre-leukemic.
Blood transfusions can help with the symptoms. Bone marrow transplants are also sometimes done to treat MDS. Is your mom seeing a good hematologist? They will be your best bet for options.

Posted By : BadDay - 8/21/2017 5:07 AM
Hi Canaveral sorry about the late reply
perhaps the reason you have not had much response is no one here has had any experience with MDS.
all I can suggest is you try a Leukaemia chat site to get more info on it
I had an issue a few years back with LGL's which can be a precursor to Leukaemia But was fortunate that when I stopped the medication they went away although it did take over a year to subside But I realise this is No Way Near your Moms situation So again you probably need more relevant info than we have here
is there a Cancer call centre you can contact? as you really need to get Professional advice
I Really Hope your Mom and you get the best help available. Take Care Both of you
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Posted By : 1 day at a time - 8/25/2017 12:52 PM
Just wondering if Canaveral received more info about MDS. It's such an odd disorder bc it isn't technically leukemia but it causes similar symptoms. The bone marrow just stops producing some or all blood components. Bone marrow depression can be managed, so try to get as educated as you can about it. Since I am also in the same boat, I know what your mom is going through. Best of thoughts to both you and your mom.

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