Link with Scleroderma and Cholesterol

[SDJ31]

Hi all - I’m on mycophenolate last 6 months and have noticed my cholesterol levels slowly rising. Really careful with my diet. Does anyone have the same issue? What tips do you have to manage this? I also have acid reflux, Do you think this is connected too? Thanks

[LadyTrundle]

 I’m recently on mycophenolate and it didn’t occur to me to watch cholesterol levels. What test is done for this? If you have bloods done, which of the results are flagging this up? So many labels and tests, I don’t know what half of them mean. 

[SDJ31 in reply to LadyTrundle]

Having monthly tests and the consultant has included the lipid test too for cholesterol. You may want check in with your consultant . The acid reflux is a symptom of the mycophenolate. I was wondering if this is linked to the rising cholesterol.

[Redwine53 in reply to LadyTrundle]

yes my cholesterol has rocked up. When I was diagnosed 4 years ago my cholesterol was a perfect 4.8. No one kept an eye on it, but a year after my gallbladder op I asked for it to be checked by the gp. It’s a blood test that has to be requested.

Unbelievably it’s 7.00, I am on 2g mycophenolate, and down to 3.2 prednisolone, down from 20. My consultant said oh yes steroids can raise your cholesterol, didn’t mention mycophenolate.. On the nhs app linked to gp I could see the totally breakdown. Anyway the gp’s pharmacist said definitely statins, but I am trying to watch my diet for 3 months, then another blood test.

Luckily I had a rheumatologist appointment and she is going to see what statins would be better for me.

Good luck in getting it sorted.

[LadyTrundle in reply to Redwine53]

Oh Good Lord. Managing our health and keeping an eye on everything and an eye on the medical professionals is a full time job!

[cowhide]

I don't think mycophenolate has any link to increased cholesterol, but scleroderma is linked to increased cholesterol. My consultant says I should get my levels checked every year (but thinking about it, she hasn't marked up a blood test envelope for me and it's over a year since I was last tested).

[SDJ31]

You’re right - it’s a full time job managing all this. I’m seeing the rheumatologist in September and will ask the question about my cholesterol. Meanwhile trying so hard to manage it through diet and exercise. Seeing my GP next week too and will request another cholesterol test. I’ve also bought a home cholesterol test kit .

Does anyone suffer with acid reflux on taking the mycophenolate?

[OldTed60 in reply to SDJ31]

can’t answer a lot colesterol as haven’t had mine tested recently - normally slightly raised. I’m on 3g Mycophenolate have been for 3 years and no it hasn’t increased my reflux but it is one hallmark of the disease itself. Maybe yours is worsening as the Scl progresses? Are you already on strong meds for reflux? I’m on maximum dose of esomeprazole for mostly silent reflux. I also have severe gastroparesis and slow transit colon and this has progressed despite Mycophenolate but not because of it as far as I’m aware.

[cowhide in reply to SDJ31]

Mycophelate doesn't seem to have any effect on my acid reflux which like for many of us, is already pretty bad but after years of struggling with it, it's better controlled than ever, in my case with high dose esomeprazole.

[Athena2023]

Hi with the mycophenolate I am having blood tests every fortnight . This monitors your kidneys . This treatment has not actually worked for me so I will be trying another drug in a few weeks. Please let your consultant know of any changes to your bloods. All the best and take care