CLL & AS

[Rosiehiker]

Hello

I was wondering if there is anyone else with both CLL (I am watch and wait) and Ankylosing Spondylitis?

I see my rheumatologist next week and she wants me to start on some form of biologics.

Tho watch and wait all 3 of my Ig levels are subnormal and I am concerned about becoming more immunocompromised.

Any thoughts

[Hamish_McTavish_III]

Hi Rosiehiker,

I'm not sure how many people on here have both CLL &AS but there are two of us at least!

I was diagnosed in 1976 with AS and CLL in 2020.

Currently I am on W&W for CLL and my bloods are doing OK. In fact if anything, dare I say it they have improved a little.

As far as the AS goes, I started Biologics in 2015 after 40+ years on Naproxen at 500 to 1000Mg per day. I was allergic to my first Biologic and had to stop that after 3 months even though it was effective. I decided to think again about Biologics as I was concerned that I didn't know enough about them and was worried about the potential link to Cancer. Thankfully they have progressed in their development over the years and I was asked to try a new one on the market called Secukinamab (Cosentyx). It works slightly differently to my original one and I felt the risk much lower. It works brilliantly and I have very little or no pain at all and although my AS is still active in places, it is now nothing like I had since my early 20's. Initially I was prescribed 150mg injection every four weeks but my Rheumy is now happy for me to self manage this between 4 to 6 weekly as I see fit. Summer time I can go either 5 or 6 weeks but in the winter it reverts to mostly four sometimes 5 weekly.

My Rheumy Consultant and Specialist Nurse have been brilliant and I had two weekly blood tests to begin with. They became monthly and are now two monthly as time has gone on. If there are any concerns I will be called back monthly. It was through this really close supervision that my Rheumy recognised and became concerned about a potential problem with CLL. He sent me to my Oncologist who diagnosed the CLL. As my rheumy says, "You are being analysed to within an inch of your life, if anything changes, I will know about it"

I am more than happy with remaining on Biologics as now I feel 'safer' with all the monitoring and extra vaccines I receive as an immunocompromised member of society.

Hopefully, this may help you with your preparation for your upcoming consultation. If I can be of any further help, just ask.

Kind regards

[Rosiehiker in reply to Hamish_McTavish_III]

Hi Hamish

Thank you for all that information!

Do you take Methothrexate with that biologic ? My sister takes Enbrel and MX and I prefer to stay away from that. My AS tho has worsened does not cause me too bad a problem.

I am not familiar with one you take and will look to see if I it is available in Ontario.

Margie

[Hamish_McTavish_III in reply to Rosiehiker]

I use Cosentyx on its own. The newer biologics, unlike Humira, Enbrel, Simponi, etc., are a bit more selective about which cells they encase, so I am told, and therefore do a better job meaning additional medication is unnecessary. Something to get your Rheumy to explain to you though as this is my way of understanding what mine told me. I hope your consultation goes well.Hamish😄

[Bears23]

I just noticed your post. It took me a long time to finally get diagnosed. I was hesitant on starting biologic, but in hindsight I wish I started them sooner. I allowed this disease to progress. I have been on biologic for 3 years and it has improved my quality of life. Remember, the disease will continue to progress, so thankfully we have some options to slow down the progression.

[Hamish_McTavish_III in reply to Bears23]

Hi Bears23,

Sorry, I have only just found your post too. I'm glad to hear biologics have provided a better quality of life for you. Long may that continue. These newer ones are so effective and I believe much safer than the originals.