Just got my blood test results today. I have MDS

Has anyone else had problems with joint pain while taking Vidaza (Azacitidine) infusions for MDS? I had my 2nd knee replacement 6 weeks prior to starting my treatment. My initial recovery & rehab was almost miraculous. I was doing great until I began taking treatments. Beginning with the 1st infusion I felt like I had concrete in my knees! They hurt badly and my legs feel like lead. I’m trying physical therapy now but it doesn’t seem to be working. I did not have this prior to treatment. My doctor said no one has mentioned this as a side effect but I could be in the 10% that experiences it.

@bbmj06
I did not take that with my MDS. Is joint pain a side effect of it? I google side effects and AI gave below.
I expect someone else will respond, but i want to say i googled little during treatment, I asked my medical team. Plus, i came here to Mayo Clinic. Did you put the drug in the search box above?

Common Side Effects
Azacitidine frequently causes hematologic toxicities, including anemia, neutropenia (low white blood cells), thrombocytopenia (low platelets), and leukopenia, which increase the risk of infections and bleeding. Patients may experience fatigue, weakness, or shortness of breath due to low red blood cell counts (anemia).
Drugs.com
+3

Gastrointestinal side effects are also common, such as nausea, vomiting, diarrhea, constipation, abdominal pain, and decreased appetite. These symptoms often occur early in treatment and may improve as the body adjusts.
Drugs.com
+2

For patients receiving subcutaneous or intravenous azacitidine, injection site reactions like erythema, bruising, or pain are frequent. Oral administration may cause fatigue, dizziness, back pain, and arthralgia.
Drugs.com

@katgob thank you for your post. I am currently being treated for AML. My BMB in December discovered the SF3B1 gene (MDS) . My MDS is in the wait and watch stage.
My left knee replacement was done 2 years before my diagnosis for AML and I have experienced consistent joint and bone pain especially in my knees since starting AML treatment in 2024. I take Arthritis formula Tylenol during the day and the PM formula at night. I have also started my own “clinical trial” by cutting back and tracking my artificial sugar. Sugar causes inflammation. My bone pain has improved by 60%! I sometimes take tumeric ( sp?) but not consistently.
I do miss my cookies, chocolate candy and ice cream but I know if I do consume it I will pay for it by tossing and turning all night due to pain. I hope you find a solution to help you as well. Prayers to all who are fighting back against their cancer diagnosis!

@sonieaml
So, do you have AML? I thought MDS was a precursor to MDS. I figured cutting all sugar will do that. I do bake cookies for this meeting i go to Monday night. Since my BMT I have found if i do not give them away, I throw them away. Little to no ice cream. Chocolate? I still eat some.
I will be getting a blood test, which is at my every 3 months for now visit after my BMT. I shall see if all my numbers are stable.
May we all keep working with our medical teams to iron out all our treatment kinks.

@katgob Yes I have AML.
You are correct about MDS is a precursor to AML however my numbers for FLT3 and NPM1 mutations were so high they knew I had AML and started induction therapy immediately. My latest Bone Marrow Biopsy in December showed the SF3B1 mutation.
Congrats on throwing away the cookies!!!

Hi @bbmj06 Your reply is so sweet, thank you! It’s also a reminder that when we post comments in Connect we never truly know how many people see what we’ve written or how they may be impacted by our words of encouragement.

I’m so sorry to hear you’re having a down day with your MDS diagnosis and also having to deal with a UTI on top of that! While it’s mentally helpful to keep a positive attitude, there are days when it’s simply not possible! Just crawling out of bed in the morning can be a struggle. So please, don’t be hard on yourself. You’re going through a lot right now!

I read through another post from you about having such terrible knee pain after starting treatment for your MDS. Hopefully you and your doctor can find a remedy for relief. Do you feel that came on around the same time as your UTI?

How new are you to your MDS diagnosis? Is there any information I can provide for you? We can all use a lifeline sometime, especially when struggling with a change in our health. I’m here for you any time if you need an ear or a shoulder. ☺️.

@loribmt Thank you for your reply! I was diagnosed last July with MDS with 5q deletion through bone marrow biopsy. I had left knee replacement in August and my recovery was almost miraculous (I had right knee replacement 2 years prior). I was doing great with no pain until I started Vidaza infusion in October. 2 weeks later I had a pulmonary embolism & 2 weeks later I passed out at church from low blood pressure. Rough start! But I’ve really been doing well since then EXCEPT for the bad pain in both knees which started with my 1st treatment. It has continued to get worse over the past 6 months. Now, my shoulders hurt too. My doctor said no one has told him that they have had bone & joint pain with Vidaza. I googled it & I think it is listed as a possible side effect. I just wonder if anyone else has experienced this.

Good morning, @bbmj06 Having those painful joints must really impact your day! I wonder if there’s an alternative medication your doctor could try for you to see if it makes a difference? Have you been able to see a rheumatologist to see if this is arthritis? For a time I had some serious issues with joint issues from a medical condition (not related to yours). Until we learned the cause, acupunture treatments helped lessen the pain. Just make sure it’s a licensed practitioner. It’s just a thought, but have you ever tried acupunture?

@loribmt No, I’ve never tried acupuncture. I do have osteoarthritis (from wear & tear plus age). That’s what destroyed my knee joints. The crazy thing is I was doing great after knee replacement surgery until I started Vidaza infusions. Now, since the pulmonary embolism, I can’t take any nsaids because I’m taking Eliquis. I have factor V Leiden so I’ll be on a blood thinner forever. I took Meloxicam for years until I started Eliquis.

Interesting about joint pain. I’m not on any meds. Still on watch and wait. However my right knee which is my replaced knee 8 years ago is swollen and hurting. My hips also hurt. My diagnosis is now MF from MDS. It really concerned me since it’s replaced. PO ray you get relief

Hollie