CLL/ Polymyalgia/GCA

[MrsB1963]

Hi I have had CLL for 9 years on WW, I am awaiting confirmation that I have Polymyalgia / GCA if confirmed the standard treatment is long term course of steroids, I understand the steroids will suppress my immune system, does anyone have any knowledge of having CLL and Polymyalgia /GCA or more information about the affect of steroids on CLL. Thanks in advance

[JigFettler Volunteer]

Hi!

Probably impossible to be certain.

What's your dose of steroids?

Jig

[MrsB1963 in reply to JigFettler]

Hi GP gave me 20mg for 4 days to trial if my symptoms cleared up.. which 90% they did, I am waiting for results of blood test to confirm Polymyalgia, I am very anxious I have symptoms of GCA but Dr does not seem concerned about this and just looking at Polymyalgia, don’t want to lose my sight

[JigFettler Volunteer in reply to MrsB1963]

If you got so much better on 20mg Pred it wont be GCA... as I understand things.

Soon you'll be on 5mg or less, proportionately less impacting on immunity.

Worth chatting to yr Doc. And Haematologist, optimal PMR treatment WITH CLL.

Meanwhile do things that cheer you up!

Thanks for sharing!

Jig.

[MrsB1963 in reply to JigFettler]

Thanks for your reply’s

I have been in touch with my specialist today..has advised I go through GP and get referral to rheumatologist, I have sourced it privately for initial consultation.

Good luck on your journey

[JanEyre]

I have had Polymyalgia for about 10 years. I also have CLL.

Take steroids every day, I also started on 20mg a day but now take 5mg.

Polymyalgia gets better for a while usually in our summer and much worst in the winter. I then adjust the dose either up or down until it settles. ( with my doctors suggestions) some summers I can go down to 2 mg.

This has not effected my immune system I very seldom get colds etc.

I think it is maybe the higher doses

that would effect us.

Maybe someone with more knowledge would know if this is so.

I hope you keep well and make sure you always talk to your doctor if the

Polymyalgia gets better or worst so your dose can be adjusted.

All the best

Jan.

I am in Australia by the way.

[MrsB1963 in reply to JanEyre]

Hi

You have suffered many years with Polymyalgia, I have read it can last up to six years.

Hope all goes well with your treatment

[keeptalking in reply to JanEyre]

Hi jan. Been wondering how you are doing. Did you start on trial and did you move to Darwin?

[JanEyre in reply to keeptalking]

Hi Keeptalking,,

Luckily my Pet/ Cat scan did not show any signs of Ritchers so hopefully I can stay on WW.

Will have blood tests every 2 to 3 weeks and see Haematologist in 2 months. Blood work seems stable and

Spleen not too enlarged and only a couple of enlarged Lymph nodes in my neck. We are going to stay here in Adelaide , although I do hate the cold we have most of our family here.

I hope all is going well for you.

Jan 😘😘

[keeptalking]

Hello. I too have polymyalgia 2 years in and CLL 17 months in. Been as high as 35mgs now 4.5 mgs. I have to say it’s the PMR that is harder to live with as you can feel so lousy and it restricts your life. However if you get your steroid dose balanced to your management zone then life improves enormously.

I haven’t found that the steroids have an affect on my CLL although I have asked my haematologist that question many times. Especially when my lymphocytes have gone down to 6.9. He just brushes it off saying that they occasionally use steroids themselves for CLL patients.

All I know for sure is that I haven’t had a cold or infection since taking them. My CLl is stable and remained at stage A.

Regarding the PMR diagnosis don’t forget it doesn’t always show up on a blood test.

So keep on pursuing if your symptoms persist. To have it without steroids is not a good thing. Good luck. Let us know how it goes.

[jcb98311]

My wife had GCA diagnosed 12 years ago. First we knew about was when she suffered a dissected aorta and was rushed to the ER. She had had the symptoms, but we thought it was just getting old. Night sweats, scalp hypersensitivity, one sided headaches, fever, fatigue. Fortunately she did not have vision problems.

The initial treatment was prednisone 1 gram (not mg) a day for 3 days, then 60 mg a day for weeks. And continuing to taper over the years. They usually don't fool around with GCA since it has so many bad side effects. Be sure to see a rheumatologist as you are doing. If you do have GCA it is critical to get it treated asap before it does further damage. PMR is often associated with GCA but not the other way around as I understand it.

Best of luck to you. My wife is doing fine now and is totally off the prednisone for many years.

[MrsB1963 in reply to jcb98311]

Thank you very much for your information, blood test came back yesterday plasma viscosity high 1.75 Gp to call today, did your wife have side affects from the steroids, I only had them 4 days 20mg and my headache was still there and had stinging sensation in my eyes, did your wife see a rheumatologist? Sorry for all the questions feel quite anxious don’t want to lose my sight.

[jcb98311 in reply to MrsB1963]

She did not have a viscosity test - rather sed rate and crp were extremely high. They did a biopsy of her temporal artery, but that did not confirm. The aorta pseudo aneurysms were the most concerning.

Side effects from the prednisone, yes. Diabetes type 2, cataracts, warts. She was on metformin for the diabetes which apparently counteracted the weight gaining propensity of the steroid. They checked her bone density because prednisone can affect that but it was OK. Made sure she had pneumonia vaccines.

We eventually found a rheumatologist, but that took a while. None in our immediate area. And yes, sight is one of the big concerns with GCA.