18months after FLAIR trial and hip arthritis looms....

[romarin]

18 months since abandoning FLAIR trial of Ibrutinib and Rituximab have been pretty well but the blood results are worsening and more treatment suggested soon- though I see two consultants and one wants to "nip it in the bud" (I thought it didn't make any difference) and the other thinks I am fine for a while yet. I quite like having both though. Anyway life further complicated by arthritis and a painful hip, x-rays show inflammation of the joint and bone spurs (who knew bones could grow?). I am told intervention not yet necessary i.e. replacement hip. But it hurts and and really restricts activities. Can't walk far.....So I must figure out how to control the pain. Paracetamol and Ibuprofen normally recommended and both together just about mask it. However Ibruprofen not advised with CLL....due to risk of stomach bleeding. For now my platelets are normal but I need to anticipate how to manage this....and what comes first more treatment or hip replacement.... Any thoughts or advice much appreciated!

I realise it is impossible to know whether there is any connection between CLL and arthritis. I am doing exercises, including my usual yoga, and thinking about Pilates too, and seeing a physiotherapist next week.

Oh and Happy New Year folks!

[Sallyurnotal]

Romarin,

Personally, I have not experienced hip pain but I have had double knee replacement. Please be careful with over the counter meds. They can be really hard on your liver especially with CLL. My thoughts of being free of pain are with you.

[Jm954 Administrator]

Well done for keeping up with the exercises and being so proactive with everything. I'm not aware of bone spurs being a side effect of Ibrutinib but it's still early days for ibrutinib therapy and we don't know everything.

Re further treatment, remember that the CLL cells you have coming back are the ones that may be more resistant to treatment. This is only my own preference but I would jump on the treatment as soon as I could to stop them multiplying, depending on what was being offered and how many other treatments you have had in the past.

All the best,

[Octavia17]

I am sorry you have such pain. My husband also has painful side effects of ibrutinib and history of gastric intestinal tract bleed.

He managed his by taking paracetamol 8 tabs daily.....which is the maximum paracetamol you can safely take.

Take codeine phos 15-30 mg at night 4hourly or less.......taking it while you sleep lessens the chances of becoming codeine addicted.

Take ibrutinib at 5pm so max painful side effects 12 hours later and 0900 the pain has faded.

My husband has stopped ibrutinib a month ago as it stopped working and bloods crashed. More consultant appointments this week.

Good luck

[Accam1953]

Romarin

I am nearly 16 weeks into a clinical trial of Venetoclax with minimal side effects and very encouraging changes to blood analysis.

I also have severe Osteo of hips and have consulted an orthopaedic surgeon re. Replacement. He told me to stop my regular 5km walks, as this was aggravating the joints and substitute this with "walking" in a pool with a buoyancy workout belt. He sent me to a general physician to find out if there were any likely problems having surgery whilst on V. The physician on liaising , with my haemo and rheumatologist , gave ok.( It appears that its all about Anaesthetist being fully informed and knowing which antibiotics are ok withV.) Booked in for first hip in March.

Currently on a worrying cocktail of pain management drugs: Targin, Lyrica, Mobic, Panadol Osteo every day; Endone for severe overnight events.

On wait list for earlier surgery which would be my preference.🙂