First visit with APS specialist-clopidogrel, hydroxychloroquine question

Hi All,

I saw an APS specialist for the first time on Dec 28. I’ve been treated by hematologists thus far, and when this doctor opened her office, my hemotologist referred me. Since I’m in the US, an APS specialist is a rare gem.

She prescribed clopidogrel (brand Plavix) to replace the aspirin and said hopefully I'll see a reduction in migraines (one of my major complaints). I'm a bit worried about taking it because of potential side effects, but I hope for the benefits. Additionally, she wants me to start on hydroxychloroquine (brand Plaquenel) to calm down the immune system since I also have Hashimoto's, fibromyalgia, arthritis & low thyroid. For those of you who use these medicines, how are you doing on them? Do you have any side effects, or advice? I also take warfarin, vitamins K & D, levothyroxine and liothyronine.

I was very worried about seeing her - that she would retest me and find I didn't have APS, or take away the anticoagulants, or … ! That didn't happen, and I learned a lot during my visit. I was diagnosed 10 years ago (at 54), but it's likely I've had it since my teens and through my PEs and DVT (in my 20’s), which weren’t properly diagnosed. I feel very blessed to have made it through those years (not to be melodramatic).

The upshot is I have very high numbers on all 3 antibodies, so there is no need to retest. I gave 11 tubes of blood, and Mary F, I didn't have to ask about B12, D and iron, she was on top of that. However, APsnot Fab, I didn't realize until after my visit that ferritin was not the same thing as iron, so don’t know if that's being checked. I get the results at the end of January and will ask about it then if she didn't test it.

All in all I feel positive about the visit, and I'm hoping for the best with the results for Sjogren’s, celiac and the myriad of things tested.

I look forward to hearing from you about the meds - thanks to all of you for sharing information and personal stories, it's so helpful.

Anita

45 Replies

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  • Ah, thats great. Sounds like you have a little gem. It also sounds like there is a new but good practise creeping in with the good specialists of not continuing to re-test antibodies of those that don't need to have them done because they have a diagnosis which is obviously not going to change! Thank heavens for that!

    Sounds like they have covered all basis. Palquenil - make sure you get the brand we recommend NOT the generic. Its made by Zentiva the sister company of the one that was stopped. We have a post about it. I thought it was in the Pinned Posts but realised its not which I will correct in a moment when Ive found it. Start it slowly, just one tablet a week if necessary, then build up to two a week etc until you are on one a day. There is no race so it does not matter how long it takes.

    The clopidogrel should be ok but I would get on that first before starting the Plaquenil so that if you do have any issues you know which drug its down to, but frankly I think you will be fine. Let us know how you are doing and what the results are when you get them.

  • Info on Plaquenil now posted and Pinned!!

  • PS Can you tell me how to find pinned posts?

  • I found it! Thank you!!!

    Anita

  • Thank you for this advice!

    Yes I am starting one med at a time, for just the reason you stated :-)

  • Hi, sounds like you have a great doctor there. I can't tolerate Plaquenil, it made me very ill, dangerously so, but my daughter is fine on it. Glad to see you have T3 added in for your Thyroid medication as that is so often overlooked. Regarding Iron, yes Feritin and folate are often looked at, I am sure she will come back to you with that, if your iron is low your Thyroid will struggle to up take the medication, and there should be a four hour window away from iron for any thyroid medications! Regarding Coeliac disease it is of course common to have gluten intolerance without having the full disease, I know I do. Keep us posted with the next phase, really pleased you had such a detailed appointment. Often Fibro turns out to be low D, Sjogrens and low Thyroid function! MaryF

  • Thanks MaryF, you've been a help to me.

    In the early 1980's I followed a gluten free diet and it wasn't easy back then. But I felt no better on the regimen, and I felt no worse after I stopped it, even felt better back on gluten. I did that for 3 years and don't expect the celiac to show positive. I know it is a life threatening problem for some.

  • What state is this new dr in. O still have not found one. Also may I ask why you take vitamin K. As it is well known for counteracting warfarins blood thining? Just curious. Thank u for your time. Really glad u found a specialist. Something that can be incredibly hard when living in the USA.

  • Hi SoulRebel-APS, I'm in Colorado. Like for my hematologist, people come from many states since there are so few doctors that have any knowledge of these issues.

    The reason for the Vitamin K tablet (100 mcg) is that my INR is consistently inconsistent. Up, down, down, up, no rhyme or reason. I obsessively monitor my Vitamin K foods, aiming to ingest 120 mcg per day through food. The coagulation clinic hoped taking the vitamin plus the food would stabilize my INR, but it has not.

    Also, about 6 years ago I tried the self-testing route, for the above reason plus the fact that my veins are very small and hard to hit for the lab people (I have hand sticks). For several weeks we did weekly side-by-side tests (vein draw and self-test at the same time) but they were up and down, not similar results to the companion test. So unfortunately I can't self test.

    Where are you? Is Colorado a possibility?

  • Im in southern NM but am not financially able to make that kind of trip. I have taken both plavix and warfarin(75mgs) since 2010 and have had no problema with the combo. Inly issue is when the pharmacy highers a new pharmacist I havevto explain to them why I take both. They always concerned but i've not had any bleeding or any other problems mixing the two. Hope the new medication will help.I to am unstable weather home testing or lab testing. It can be a bit frustrating. Hope the new meds work out well for you.

  • One thing the doc said to me was that I'd been on warfarin with no events for 10 years - so it works for me. That made me feel good. It sounds like your regimen works well for you too. Aside from the pesky pharmacists :-)

  • Yep then pesky pharmacist always trying to make sure I know that warfarin + plavix can be deadly. I just got to teach them that its not nearly as deadly as me not taking them both! Lol thats their jobs and im glad they double check and make sure I knlw what me doing. Habe a great day!

  • You might try explaining to your pharmacist that you don't have any signs of excessive bleeding (if you don't). I'm taking Elaquis and Plavix, but no bloody nose, no gum bleeding, no unusual bleeding, etc. A month or two ago I fell and rolled over the curb. I felt like I had hit just about every part of my body. I really expected to see bruises all over my body, but no. A couple normal looking bruises. This are some of the reasons I'm quite sure I'm not over-coagualated.

  • Thank you I do tell them that if I experience any bleeding issue's I will go to ER. They just have to cover themselves if something happened and they had not mentined it I could sue them. Understand their concerns for my health. Once I explain they are fine with it. Thank u

  • I'm also on Colorado ! Do you just see a Hemotologist or a specialist too?

  • I've only ever seen a hematologist, but at my last visit she referred me to a new APS specialist in Denver, Dr Jill Schofield.

  • With Plaquenil you need to have a baseline eye exam within the first 5 months of taking it and then checked again but cannot recall how often. It can damage the eye's retina though rarely does. I had not heard about starting it slow. I went right in at once per day though did start the Plavix first then a few weeks later the Plaquenil. The Plavix hasn't helped my migraines so I am not taking it anymore. The Plaquenil has been wonderful for joint pain, expecially my hips. Glad you found a great doctor. Reminds me of mine in Colorado, the way your doctor went about things.

  • Yes, I already have some eye issues and she wanted me to first call the eye doc plus get the baseline test before starting. She said it was long-term use causing the macular issues, and that it was cumulative use of the med. Her definition of long-term use was 20 years. I'm sorry the Plavix didn't help you - have you had any relief from them with something else? Are you still in Colorado? Do you have a good doc where you are?

    Anita

  • I am still in Colorado and see Dr. Schofield. She's amazing. I first saw her when she was with University Hospital. I don't have any one thing that helps my migraines best. I do take Relpax and it is helpful at times. Occasionally Botox injections are useful. Otherwise, that is about it.

    Patti

  • That's great you are here. She is amazing! I got caught up in the transition stuff, I was originally going to see her in October, but then it was moved back to December. I was just glad it was still in 2016 since my insurance deductibles had been met :-0

    Anita

  • So you are here! We must have the same hematologist too if yours referred you to Dr. Schofield? That is great you got in by the end of the year! She is such a thorough doctor I am in awe of her.

  • Dr Hassell? She is wonderful too. I'm in awe of both of them.

  • Yep! Dr. Hassell. I always learn something new from her. From both of them really. They're both leaning toward me taking something other than warfarin because usually my INR is pretty labile. But I test at home every week and can get 6 weeks at a time within range.

  • Wow that is great your INR is so stable!

  • Prof Hughes does not feel eye exams are needed as the dose we take is so low 200/400mg per day. There was a study done which showed that at that level there was no risk. You start is slow to avoid any symptoms that some people can get. therefore negating that issue. Id also recommend taking it with food.

  • By starting slow, could you be a little more specific? Do you mean taking it 3 times a week to start, or less? That's great to know about the eye issue, I won't worry about it. I'll still get the test since the doc wants me too.

    Anita

  • Everyone is different. I know a lady who took low dose Plaquenil and had eye issues that did not resolve when she stopped. I'm only sighted in one eye and my Opthamologist wants to see me every 90 days starting and every 6 afterwards. My Insurance Co is paying for it without a hassle, surprised me.

  • I am on hydroxychlorine and it has helped my joint pain alot thou not in hands. I have had no side effects which is marvellous as alot if drugs do give you other problems. Hope it helps you

  • That is great, I'm glad it 's helping you! Thanks for the positive report on lack of side effects :-)

    Anita

  • I have been through a lot of different drug such as arcoxia and eterocoxib, but the plaquenil (zentiva) is perfect, was told by Prof Hunt that it would improve my joint pain and how right she was. Started on 200mg a day and not enough, so when I went back she increased it to 2 x a day. Have my eyes tested yearly no problem. However if the phamacy give me different Hydroxychloroquine then the pain in my hands stars immediately. I have most of my meds in a box system, which is great as when I go into the hospital as an inpatient I ask them to use all of these meds as they do not always provide ones that I'm on, so it saves the agony from occurring. For example for my acid reflux I am taking rabeprazole but no hospital holds it and tries to replace with lansoprazole. That doesn't deal with acid. So I talk it through with ward pharmacist and they agree to me self medicating. Saves the staff an awful long time trying to find 10 meds from their trolley too.

  • Gosh Peecue, that is really good thinking to bring your meds with you. I hope it isn't too often you have to be an inpatient.

    I will make sure to ask for the brand name. I take warfarin as a brand-generic, called Jantovin. It always has the same binders and fillers, plus the warfarin.

    Good luck to you.

    Anita

  • Forgot Forgot add that the proper Hydroxychloroquine is in there too x

  • I am now 70 years old and had my first blood clot in 1963. Blood clots went from legs to my lungs. No one knew the cause but a smart internal medicine doctor in Charlotte finally put me on warfarin. I do not even think this disease had a name then. Another doctor finally put a name to this in 1990. I did have a had a heart attack in 1916 caused be a blood clot. I have a stent for that now and an on Plavix, aspirin, warfarin, blood pressure medicine and Sotolal for an irregular heart beat. I have a lot of brusing but I still do a lot of things. I usually can manage to do what I need to do. God has blessed me greatly. I hope you will get better.

    Steve,

  • Hi Steve,

    I am 72 and live in Sweden and feel fine on Warfarin. I have Pulmonary Hypertension and leaking heartvalves but I am not breathless and try to exercise as much as possible and eat healthy food. My therapeutic level of INR-Warfarin is 3.5 - 4 and I selftest.

    So you take both Plavix and Aspirin?

    Hope you have found a Specialist which is difficult in the US. What state do you live in?

    Best wishes from Kerstin in Stockholm

  • I live about 10 miles west of Charlotte, North Carolina. I also walk some and do light weight lifting at the gem. I have a lot of sore muscles and cramps in my legs. I do not have an AP specialist but have been treated all these years by my family doctor and my heart doctor at Caromont Health Care in Gastonia, NC. Yes, I take Plavix, aspirin and warfarin. I also currently take Atorvastatin. My doctor keeps my INR between 2.0 and 3.0. I adjust my warfarin dosages at his direction. He checks my INR once monthly and more as needed if I am out of range.

    Thanks for the reply.

    Steve

  • You had a heartattack last year. Have you done an Echocardiography with doppler on your lung/heart?

    Have you read "Sticky blood Explained" by Kay Thackray? She has APS and angina-issues and tells about the different symptoms of APS. A good book to understand our illness.

    You have to show your Doctors what prof Hughes says about our sticky blood that has to be thinned at a stable and high level over an INR of at least 3.5. We do not bleed from APS - but clot. The Doctors in the US do not understand APS and that we have very thick blood. It is also usual with APS and microemboli and they are not seen on a Scan of today.

    One more thing - it is vital that you do not have high bloodpressure. I had exstremely high bloodpressure and the drugs for it did not work as this was a symptom of APS. After a high INR of Warfarin my bloodpressure is ok but I have Pulmonary Hypertension from it today and from micro-PEs.

    Have you tested your blood recently to see if you have more antibodies today than 1963? Have you ever tested positive to Lupus Anticoagulant?

    I hope you do not mind me asking you these questions as I hope to be able to perhaps help you a little to avoid trouble with your APS. We are in the same boat with the same age. I have only had it since around 1990.

    Kerstin

  • I think you are right, it might not have had a name then. I wasn't tested for clots because I was 'too young' to have them. Steve, thanks so much, and good luck to you, it sounds like you're doing really well.

    Anita

  • I'm glad you finally got to see a good APS specialist. (I think I saw her the day before you.)

    The Plavix works quickly, so you will see soon if you feel better or not. Plaquenil takes weeks to months to really kick in. A lot of people have flares while they are first taking Plaquenil and they blame it on the Plaquenil, but you can still have a flare on Plaquenil. When I first started taking it (in the 80s) my rheumatologist told me that the flares would be shorter and less severe And that was true. I haven't had any side effects that I know of from either of the drugs.

    By the way, I haven't ever seen the Zentiva brand of plaquenil here in the states. My drug store told me I really didn't have a choice but to take the generic they carried.

    Hope all goes well with you, but just be patient with the Plaquenil.

  • Hi AnnNY, I'm so glad too. I didn't know there was such a thing before getting on this list, and then getting the referral. It's such a complicated issue, and like other complex diseases, really does need a specialist.

    Are you getting your eyes checked regularly?

    Today I took my second Plavix, and I'm happy because I'm on Day 2 of No Migraine, yay. I'm thinking positive that Plavix is my answer. I saw a neurologist for 9 years and did all the preventive meds but nothing really helped. I even retired last year (2 years early) because of the migraines.

    Are you in Colorado or did you travel here for the appointment?

    Anita

  • Sounds like you have the correct drug Plaquenil and not one of the the other brands of Hydroxychloroquine which is brand name, which is why we ask for zentiva as the others don't have the magic requirements that stop the hurting. Glad you can still get Plaquinel AnnNy it was fine until it had to become unbranded here

  • Isn't it sad. I went through so many years of migraines. The same rheumatologist who started me on Plaquenil suggested I try aspirin, but since I was using Advil for pain, and I didn't understand what he was getting at, I didn't try it.

    Yes, I am getting my eyes checked every six months, although I have heard once a year is OK.

    My brother and his family live near Denver, so I enjoyed Christmas with them, and also saw the rheumatologist.

    I hope you will be feeling better soon.

  • Anita, where are you located in the US, and who is the "specialist"? Thanks

  • Never mind I found your APS Specialist: Jill schofeld in Denver Coloradoin the post!

  • Are you going to try to see her? She's terrific.

  • No, but always interested to find "specialist" in US, thanks. May be helpful to others.

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