April 24, 2021 at 11:34 pm #54372Carol WardParticipant
I was diagnosed with MDS in 2016. My problem is very low platelets which run anywhere from 24 to 40. I also have severe osteoarthritis. I had the osteoarthritis before I was diagnosed with the MDS. I used to take anti inflammatory medication, Advil etc which helped a lot. Now as you know because of the MDS I can only take Tylenol which really doesn’t help. Does anyone out there have arthritis and take a medication that works and doesn’t Affect the MDS. Everything I read says it could cause bruising or not to take if you have blood disease.April 25, 2021 at 5:49 pm #54375Amy S.Participant
I also had arthritis before I was diagnosed with MDS. My doctor said Advil may lower the platelets and he prescribed celebroix (?). I also use Bengay extra strength on the joints to avoid taking anything orally. It seemed to help. Perhaps ask your doctor on what to take. Make sure you tell him/her all the medication that you are taking including over the counter supplements.April 26, 2021 at 4:33 pm #54409MichaelParticipant
I was diagnosed in June 2016. My cytopenia is neutropenia. Currently on watch and wait. Platelets are consistently in the normal range.
In July 2019, I was diagnosed with polymyalgia rheumatica. Prescribed prednisone which brought pain under control but managing it for 20 months was brutal as you need to taper down prednisone dosage.
Then as the poly was diminishing my rheumatologist ordered X-rays that revealed osteoarthritis in my hands and knees. Prescribed diclofenac which is a topical to be applied to the painful joints. It helps but is a topical nasid as opposed to oral.May 14, 2021 at 12:57 pm #54511Carol WardParticipant
Thank you so much for your help. I plan to see a rheumatologist as well. Maybe if my hematologist and rheumatologist put their heads together can find a drug that can help me.August 10, 2021 at 9:18 am #54822Juan ValeroParticipant
I was diagnosed with mds on 2016 i also have psoriatic arthritis …the arthritis used to flare up every two weeks and keep in bed with horrible pains for 3 days on a row…i like to research so i discovered IP6 with INOSITOL..since i started taking it (on the powder form) the pain its gone for incredible it might sound…i was on 1600 mg of ibuprofen every 8 hours on the flare up days and it didn’t help but a little…please do some research on it ..i have friends with arthritis that are taking it now and can feel the difference…also it really helps with the low energy from the mds…to me it is a change on life stile…hope it gets better for you guys as well…August 10, 2021 at 4:05 pm #54825tamParticipant
Here’s another natural pain remedy that works for me every time. Prepare a cup of golden milk with raw ginger, raw turmeric, almond milk(or substitute) and water. Add 1 inch ground raw ginger and 1 inch ground raw turmeric to saucepan that include 6oz almond milk and 6oz water. Throw in three peppercorns and bring to a simmer. Simmer 10 mins on low, strain, and drink. Delicious drink that will knock out pain. Ginger and turmeric have been found to be as effective as over the counter pain relievers. Enjoy!
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