Actemra update

[Gaijin]

I haven't written or even read much on here for a while. There was a perfect storm, coming from all directions, for a depression to set in. I was completely dysfunctional, any little thing made me cry or rage and I could not concentrate on anything. I'm better now, I've talked myself out of the depression.

Tomorrow, I will give myself the 7th weekly shot of actemra. I had a blood test a week ago and it showed the liver was OK, my CRP was within the normal range for the first time in years.

When I started the Actemra, I was on 10mgs of Prednisone. After 4 injections, I was told to taper by 2.5mgs, I was reluctant but complied and after 2 weeks, I tapered to 6.25mgs.

So far I feel fine, far from remission, but I am back to being able to plan a day and do activities, etc. I have overwhelming family situations going on at present but despite the stress they are causing me, the Actemra seems to be doing its job.

My GP was alarmed at my cholesterol level. I refused a Statin so she prescribed another, newer cholesterol lowering drug... Don't have access to the name right now, starts with an E. I took it, and the very next morning, I felt like I was having a PMR flare. So I've stopped.

I explained to GP that Actemra, as well as BP meds, raise cholesterol. Plus, I hadn't been able to exercise since before I was diagnosed in Oct. 2016. I also had to go off the low carb diet which is so essential for lowering cholesterol because I had nausea and developed an aversion to meat and fish. I tried to reason with her that now that I felt so much better, I would resume a ketogenic diet and exercise, that my cholesterol will go down, but it's futile... She won't listen.. I hated to point out the latest findings on cholesterol., I just hate feeling like I know more than my doctor about my ailments, let alone express what I know to them!

It's so nice to "be back".

[SheffieldJane]

Welcome back Gaijin you were missed. I am sorry the black crows of depression have been circulating round your head, well done for seeing them off. Really sorry about family insoluables. If you need to talk, really happy to PM with you. Good to have your update and to see you still have the fight in you. X

[PMRpro Ambassador]

There I was yesterday wondering where you were!!! Welcome back!

My cardiologist was on about statins - apparently she wrote to the GP as she had forgotten to mention them. No...

Same here - if you want to talk.

[Gaijin in reply to PMRpro]

Thank you for your"welcome back", PMRpro. I was thinking of you all these dark days, trying to remember all the PMR hacks you taught me in order to figure out what symptoms were what. Hahaha

I wrote two responses to you today but neither got posted.... Go figure.

[venezia1]

Just picking up on your observation about ypur GP. I am lucky to have an excellent practice with several good GPs, but I realised some time ago that none of them were up to speed with RA/GCA/fibromyalgia. This was confirmed when one of them told me I was regarded as an "expert patient". Apparently it is acknowledged that I know more about my conditions than they do! This lowered my frustration somewhat, especially since they are happy to listen and will take note of my concerns. But thank heavens for PMRpro and all the other knowledgable people on this forum!

[Gaijin in reply to venezia1]

You're so right.. There is no doctor I see that is up to date on everything like PMR pro and the other experts on here.

I'm frequently asked if I'm a doctor and yet they never take anything I say seriously... When I told my Gp that my current dose of pred was 6.25mgs, she looked at me as if to say, "what are you saying, you fool".. till I explained that the rheumi told me to split the 2.5 pill in half.. Actually it was me who suggested to the rheumi that I do that.. normally they tell you to taper by 2.5 mgs here.

[Rimmy]

Pleased you are back from a 'dark place' Gaijin - well done for 'talking yourself out' of it - that takes real courage and determination !! I told my GP after one high cholesterol result that I refuse to have any more such tests until I am off Pred completely as I wont take statins anyway so why worry about it and possibly raise my BP !? So when he accidentally added it to my last bloods and I pointed it out he pleasantly deleted just it (LOL!!) I am obviously NOT known to be a very 'compliant' patient but he bears with me so politely !

[Gaijin in reply to Rimmy]

That's a great idea, Rimmy! I'm going to copy you and refuse to get the tests done till further notice..

[Hidden]

I am sorry you had a visit from the Big Black Dog... : ( ...but happy you were able to get him to leave and talk yourself into a happier state! Good on you! I hope you get your med issues sorted out soon. I too have very high cholesterol and the GP just keeps saying the same ol thing... stains, statins, statins. And I keep saying, "No thank you." Be well and welcome back.

[Gaijin in reply to Hidden]

I keep reading more and more literature about how statins, especially for women are more of a risk than having high cholesterol...but they keep pushing them on everyone. My Gp said she "wasn't getting a commission for prescribing statins" but she sure acts like it! 😂

[Hidden in reply to Gaijin]

Yeah, they just scare me.... and I have a bad feeling about them. Not very scientific or intellectual... but hey, my body, my rules.

[Gaijin]

roguehealthandfitness.com/o...

This article came to mind, re the statin pushing.

[NanJean]

The Prednisone has raised my cholesterol to 200 & my LDL. My liver enzyme SGPT or Alt has been slightly elevated despite treatment. So, I worry about Acterma as my Rheumatologist took someone with Rheumatoid arthritis off Acterma due to rising liver enzymes. And he pays no attention to my cholesterol & LDL.

My internist told me not to worry about the cholesterol & LDL. I started taking Cellular Active Ubiquilone 100 mg 2 xs per day for a month. Then, I went down to once a day. I won't see my internist who does the more complete blood work until July. And I'll see if it makes a difference.

[Gaijin in reply to NanJean]

I think your rheumi and Internist are right, total cholesterol of 200 is nothing to worry about. The liver enzymes being raised can be a side effect of actemra, and obviously it is a worry. I'm being closely monitored for any liver dysfunction as I have a dormant hepatitis B that could possibly wake up due to it, but so far all liver markers have come back clear. The gastro was consulted, she said that at the first sign of liver problems, they will deal with it.

My PMR was a complicated kind, I wasn't able to hardly do any activity at all, and I had GCA symptoms, too. Despite getting a PET-CAT and a temporal and carotid ultrasound, both negative, I will never be 100% sure because neither tests are effective in patients already being treated with prednisone.

If I could live a moderately normal life with just prednisone, I would definitely have refused the Actemra, although I must say that I feel pretty good since Actemra kicked in, I went to the gym, did a one hour yoga class, then in the afternoon, I walked a couple of miles...and no DOMS! I still get tired, my shoulders and hip girdle hurt during some of the yoga poses but I would never have been able to do anything close to that without Actemra.

It's probably true what my friends are saying, I'm getting the Actemra for investigative purposes, but I think everyone wins.. . So far!

[Gaijin in reply to NanJean]

Forgot to say, nanjean, thank you for sharing about the ubiquilone, hope it works for you!

[PMRpro Ambassador in reply to NanJean]

My total cholesterol is over 200 - but my HDL is about 80 I think. I refuse to take a statin - though I am about to face pressure from the cardiologist I suspect!

Did the internist suggest the ubiquilone (coenzyme Q10 for anyone who doesn't recognise the name!).

[Gaijin in reply to PMRpro]

Would you take a statin if they proved you were at high risk for a cardiovascular event through a calcium score?

Im not sure if even then I'd take them.. They make me feel just like a severe PMR flare, so what would be the point of taking any treatment for it?

Sorry. I can't seem to put a simple sentence together, lately.

[PMRpro Ambassador in reply to Gaijin]

Same for me - if I feel that ill I really can't see a lot of point in taking it just in case. Nothing is certain...

[Gaijin in reply to PMRpro]

Something that makes you so sick couldn't be good for you.. They're so scared of Prednisone because of the side effects yet they so readily want to put people on a drug for life that causes diabetes and myopathy.

[CrazyTrucker]

There’s a reason why it’s called practicing medicine