Is it the methatrexate or a rejection of Ibrutinib

[Mick491]

It's been a while since I have posted, mainly because things have been going ok since being put on ibrutinib last September. Prior to that I was also on subcutaneous methatrexate (20mgs) for psoriatic arthritis but was taken off it when I began treatment. The arthritis came back with a bit of a vengeance and my consultant's thought it now safe to restart. I did and its given me a lot of relief. However, over the last few months I have developed uncompromising fatigue, generally feeling unwell, blinding headaches things going out of focus and blurry vision. First stop was to the optician as I wear glasses. That was fine and no real change there. Then the nurse specialist from rheumatology called checking up as I have fortnightly bloods and asked how I was feeling. I explained not good. She told me that in a fortnight my white cell count had risen from 70 to 91 and lymphocytes were 86. She advised me to contact hematology. So I went yesterday and had a thorough work over. WBC had risen slightly to 92 but the lymphocytes had also jumped to 90. When he summarised he could not explain everything. He did say the symptoms show the CLL could be active, which would mean the ibrutinib wasn't working. However, he worked the dates with the bloods changing coincided with going on the methatrexate so hes stopped that. Hes organised a CT scan to check abdomen and thoracic area. He could not explain the vision so hes referred me to a specialist optician also an MRI on the brain. Hes having me back in 2 weeks but if things don't improve before he will admit me. I and all of us the UK are so lucky to have NHS fighting our corner. I know I cant be cured but for the last 9 months I have had a better quality of life than I have had for some time. Sorry about the length of the post but I thought I would share with you all.

[Jm954 Administrator]

I'm sorry to hear all this Mick but it sounds as though you are in good hands with your doctor who seems very thorough and caring.

Even without your history of psoriatic arthritis, for some of us, Ibrutinib can cause severe joint pain which is very disabling and you have my sympathy there.

I hope all this works out OK and you can stay on the ibrutinib.

Please let us know how you are

Jackie

[Mick491 in reply to Jm954]

Thanks Jackie. Will let you know as things progress.

[Kokobean]

Mick, I read your post with interest as my husband also takes methotrexate for RA and started ibrutinib a week ago. The specialist is giving him infusions of Rituximab once a month for six months and the rheumatologist has said he can go of Enbrel and maybe methotrexate during that time. I hope things straighten out for you. It’s hard to know how these meds interact and often seems the doctors don’t either. Best Wishes!

[Mick491 in reply to Kokobean]

Thank you. Many people apparently take both meds without problem. We are still investigating and I'm hoping it's the methatrexate as failure of ibrutinib doesn't bear thinking about.

[terryI_uk]

Sounds like you're going through it Mick, hopefully it will be sorted soon, God bless, Terry

[very]

Sounds as though you are having a rough ride, hope you will soon be feeling better.we are so lucky to have the NHS.

Jenny uk

[AnneHill]

Hi Mick, I hope things get sorted out. Have you had your sugar levels checked? I get headaches and blurred vision if I have high levels. Im careful now I know Im diabetic. Sweet drinks are the worst.

Its just a thought. Seems like the consultant is lookng after you well.

I hope things improve, Anne uk