Hydroxychloroquine

[MLNC]

In light of the recent article regarding Hydroxychloroquine and APS posted to the APS fB page, has anyone else been advised by St Thomas's Rheumatology Department to reduce your dose and consider dropping it altogether? Also, is anyone else being moved over to the care of the Haematology Department?

[lupus-support1 Administrator]

Would you kindly refer me to the article? Many thanks!

[KellyInTexas Administrator]

Hello,

Which APS fb page?

When you say, has anybody else been advised to reduce dose or drop altogether “

Do you mean you personally have been advised to do so by St Thomas?

Could you clarify for me please? ( I’m not a big face book person.)

[MLNC]

I believe this is the link:

ncbi.nlm.nih.gov/pubmed/308...

It was suggested that I reduce my dose and see if it makes a difference, because the view was Hydroxychloroquine is not necessarily helpful for APS, contrary to this article. Curious if other people have reduced and how they felt?

[KellyInTexas Administrator in reply to MLNC]

Thank you very much for clarification.

I myself cannot take plaquinil. I’ve tried and tried but it’s very upsetting to my GI system. I titrations very slowly, with food, etc. I’ve changed to manufacturers, etc. My Rheumatoligist finally said- you really just can’t do it.

I will answer you as to what my Rheumatoligist(s) and neuro opthamologist tell me about plaquinil.

I like to preface statements with, “ this is the current medical thinking...” ( It does change and evolve, doesn’t it?)

Plaquinil is not as damaging to the eyes as it used to be because the dose has been lowered- at / under 400 mg and it’s not as toxic to most patients.

Plaquinil should be dosed to patients body weight.

*In the United States, excipients are used in some manufacturing brands. ( talc and alcohol.) when possible use the manufacturer Zydos. ( excipient free.) Most major insurance brands will cover- ask your pharmacist to order for you.

Per Dr. Jill Schofield, Denver Colorado ( My APS Specialist USA Rheumatoligist)

A major benefit of using Plaquinil other than stated benefits of relieving aches and pains and possible research into cell signaling ( cytokines) , ( and the following statement likely ties into this ) is that Plaquinil use, “ may halt or delay the progression of other auto immune diseases that like to join in the mix with APS, such as lupus, Sjögren’s, auto immune thyroiditis, for as much as 10 years.”

Dr Jose Roldan , San Antonio Texas ( my Local Texas Rheumatoligist ,and I think by now I consider him some what an APS Specialist.)

Note: London Bridge Lupus center has been pleased with his treatment and clinic letters - makes me feel confident.

[milkwoman in reply to KellyInTexas]

Did you ever try the name brand? It’s the only form I can tolerate. All generic forms upset my GI system to the point I couldn’t function. No issues with the name brand. I’m in the US so our formulation may be different.

[KellyInTexas Administrator in reply to milkwoman]

I have not. I would need to look at the excipients. I saw Dr Jill Schofield and she said if a manufacturer uses talc or any alcohol excipients you cannot use that manufacturer.

She actually recommended a compounding pharmacy in Golden, Colorado. ( she gave me a few to try.)

The problem was it was in a translucent capsule that didn’t split apart with powdered medication inside- so I couldn’t couldn’t quarter the capsule to titrate.

Also, my insurance does not cover brand name Plaquinil, only generics. ....it’s about $400.00 a month I think out of pocket. Outrageous.

And now another big issue... Imy Rheumatoligist and Hematologist together have decided I need to be start infusions of Rituximab. It’s an immune suppression.)

I am not sure Plaquinil should be on board with this at the same time. Probably it would not matter, as Plaquinil is only a modulator. But I really don’t handle Plaquinil well...

Even the excipient free form made me really unwell. My Rheumatoligist said it’s just the medication itself that I just can’t tolerate. It may be worth one time only trying the brand Plaquinil... I’ll ask. M Rheumatoligist May say now that’s weve eliminated the excipients, it’s the actual medication itself you can’t tolerate.

Thank you for thinking of me, and enjoy the spring!

[milkwoman in reply to KellyInTexas]

You have to be careful with compounded medications as well. They are never “excipient free”. I have several medications that are compounded. Avicel (aka. microcrystalline cellulose) is the most common base used (microcrystalline cellulose is also the most common base used in supplements).

I cannot tolerate Avicel (again, bothers my GI system - found this out the hard way) so now my base is Acidophilus. Another base choice is sodium bicarbonate.

You even have to be careful about the capsules used. There should be choices with that as well. I believe I now get a vegan capsule.

I had to get a Prior Authorization from my doctor for namebrand Plaquenil so that my insurance would cover. My old insurance covered most of it. My new insurance covers only part. It’s less expensive when purchased in 90-day supply. I’ve just reached my deductible so my next three months supply should be much less expensive.

Good luck!

P.S. still freezing here! We might get snow on Sunday.. 🙄

[KellyInTexas Administrator in reply to milkwoman]

Dr Jill Schofield is an expert with this. She is very particular with the compounding pharmacies she recommends. She is in Denver Colorado, and she trained under Dr Hughes himself, but has branched off into her own interests with an APS focus. One is MCAS. What you are decsribing touches on these reactions that can be part of MCAS , and 50% of her APS patients have MCAS.

You can look at her website, center for multi system disease in Denver Colorado. There is a link on that site about MCAS.

[milkwoman in reply to KellyInTexas]

Interesting. I have lupus and Sjogrens. I’m also HypoT. I have only one marker for APS so no formal DX. I hadn’t heard of MCAS. Seems difficult to diagnose. I’m not sure how responsive my rheumatologist would be to it.

My digestive issues are varied and somewhat sporadic and I don’t have the skin lesions. My docs have been after me to have a colonoscopy so I am having one on April 23. Only after that, if it comes back clean, would any of my docs listen to anything else. Don’t get me wrong, they are great, it’s just a process. I do have my annual physycal on April 16th so I will bring up MCAS with my GP just do we can start the discussion.

How were you diagnosed?

[MaryF Administrator]

I can't take it due to having severe allergic reactions, my daughter has had hers reduced by half but she is keeping detailed notes and so far seems ok. We are under a team at St Thomas' as well as other places, myself and offspring. MaryF

[HollyHeski Administrator]

APS UK posted on their webpage and emailed out an article with reference to 10 years plus use of hyroxychlooquine and retina changes to eyes.

Any one on this drug have always been told by St Thomas to have their eyes checked yearly.

They are now advising every 5 years to have full eye examination by eye specialist rather than an optician.

For me, I'm on 400mg per day and have been now for over 11 years.

I went through the hospital back in August last year - all ok.

No mention from St Thomas's about reducing dose. I'm under haematology.

[lupus-support1 Administrator in reply to HollyHeski]

I take Plaquenil for SLE. It has mild blood thinning properties. Although there are other brands of hydroxychloroquine, many find Plaquenil, is the best. However, the NHS is reluctant to pay for Plaquenil.

Plaquenil may affect the eyes in2 ways. First, it has been found that if a patient is immediately prescribed 400 mgs (2 tablets),

Some patients eye muscles are affected which can lead to blurred vision. Although frightening, tis symptom stops when Plaquenil is stopped. Therefore, patients should only be prescribed 1 x 200mgs at first and then increase.

Eye toxicity can e a serious problem. Before starting Plaquenil, an ophthalmologist should examine the eye and an annual visit is recommended. I have been taking Plaquenil for 20 years.

Plaquenil is a central drug in the treatment of SLE. It is usually well tolerated - there are always exceptions and all medication may have side effects. It can help in pain and fatigue.

[LindaMorrell]

My skin turned blotchy and black when I took it and it seemed to play around with my vision.

[AlisonT2]

Hi I am already only seen by Haematology at Guys. A couple of months ago my GP questioned why I was on Hydroxychloroquine and felt I should come off them, however Haematology categorically said no because of the benefits to APS patients.

[Tucson]

That's weird I declined it when offered it by st Thomas's and they were quite arsey about my refusal tbh. I've had problems in the past with all anti malarial meds and refused it based on that and they were quite adamant that I should take it and very insistant that I should at least try it. I was equally adamant I didn't want it and no amount of pushing it would convince me. I haven't seen them since last year as my appointments keep being cancelled and rearranged and then cancelled and rearranged etc etc.