Autoimmune meds

I was curious if there was any other medications like plaquenil for Hughes, Sjogens? I take plaquenil but wanted to see if their were other medications

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  • Other folks can ring in. I tried plaquenil, but it did not help with my body aches and pains.

  • I'm assuming you mean other than anticoagulants as well?

  • Yes, I am on warafin

  • Hi there are other versions of the antimalerial, (Plaquenil), and on here people are on a variety of anti platelet medication or anticoagulants. MaryF

  • Hi, I have taken hydroxychloroquine 400mg since being diagnosed with sjogrens, well over 10 years now, which helped reduce symptoms. (Same as plaquenil).

    Last Sept started taking low dose naltrexone (LDN) for thoriacic outlet syndrome, which reduce those symptoms by 40% but added bonus, after about 6 mths noticed my bone pains had gone and my SS flare up were greatly reduced.

    I have now reduced my hydroxychloroquine to 200mg a day - now thinking of taking every other day to stop all together, but that jump is a bit frightening. Tried to stop taking years ago, but pain was severe and took months to get back to tollerable pain.

  • I am on 8mg warafin a day. I was on plaquenil 400 mg a day then dr reduced to 200 mg. It seemed I got worse but went back to 400 but still not doing great. I guess you could say I have had a little bad luck. I was back working 12 hours a day and coming home and had a tornado blow a a 30" oak tree on my truck where I was pinned in my truck. My hand was caught between steering wheel and windshield. I hit the tree doing about 55 mph. Hand was cut up by glass but they stopped bleeding at wreck. When I got to the ER my INR was 6.7 but felt great. Then 2 months later I had a kidney stone so back to ER but I was workingbup a storm until I started pass the stone. I got to the ER and they said my INR was 10. They gave me a vitamin k shot and it dropped to 1.2 in a day. I begged the dr to call my dr or coundin lab but they didn't and finally when I called him in front of them, they still didn't listen to him. The hospital dr said he didn't believe me about my INR dropping quick if I don't take my meds. I stay in hospital for 7 days and sent home with my INR 1.6. It took 15 days to get my INR above 4. I know I am missing something. It seems the higher my INR the closer I get to normal but I know if it get to thin I could have a brain bleed. It does seem if my INR is 4 to 5 and stays in that range I feel good but is this dangerous. There is no specialist close by but my dr is really trying to learn more and watching dr Hughes blogs. Any advice is appreciated. It really hard for me not to be able to work and really want my life back.

  • And I thought I had bad luck, hocus pocus I hope this changes for us!

  • Sorry I forgot to post the reason the INR got to 10 was the antibiotics they had me on

  • See Nov question of the month Professor Hughes himself video-ed on this himself: share it with your physicians... good luck, keep us posted please

  • There are many people on here that have high INRs of 4 ish. If I were in your shoes I'd probably make an appointment with the nearest good APS specialist who you know will support higher INR. Get a treatment plan printed out and take back to your local Drs. That will probably be the best bet as they will see it's needed and accept. I'd also have it put in your notes you need heparin shots when INR falls below 3 to help when you have issues with medications etc. That's what most of us do here and it helps to get acceptance in continuous treatment.

  • Hi Scottc,

    I am glad we do not have those terrible tornados in Sweden. Very good that you are still alive and ok now.

    I am always nagging about a Specialist and I do it once again because I know that is the most important thing. Have a Doctor who understands autoimmun illnesses as you also have Sjögrens (was that correct?) Usually a Rheumatologist who is specialized in autoimmun illnesses.

    7 months ago Mylafont mentioned "Cleveland" where you could find a Doctor. Have you found a Specialist today? You should try again.

    As to the anticoagulation; Warfarin is the best drug for HS/APS today but very very difficult to handle especially if you can not selftest on your own and monitor your own Warfarin. Also if you are Lupus Anticoagulant it can be very difficult as the INR will go up and down a lot even from day to day.

    I selftest every second day and sometimes every day and keep my INR around 4.0. I eat greens every day (about the same amount) and use the greens to lower my INR when too high. I also have a Fragmin-shot to take if my INR is too low.

    Here I have the possibility to do this but in the US I know how difficult you have with these things (finding a Specialist and keeping the INR high enough).

    There is a possibility to take a Heparin-shot instead and you do not have to think of INRs and you can eat what you like. It is measured by your weight. You could ask about it but first you should get that Specialist!!!

    Best wishes from Kerstin in Stockholm

  • Thanks Kerstin

    I went to Cleveland in January and the dr there said I needed to be at 4. My rheumatist sent me to a hemotolist at the cancer center here but he was no help. My rheumatist is really trying but over here it just so rare and it seems Cleveland is the closest place. They are going to do more tests and probably I will have to go back up there. My dr has checked and there is no specialist around here. The dr at the cancer center said I wouldn't be able to tell if my INR is high or low but I promise you I can. Actually didn't believe us when we said the dr in Cleveland said I should be at 4. Also what is weird is they say that self testing doesn't work with Hughes but everything you stab and Mary has been exactly what the Cleveland clinic said. Basically they believe warafin and plaquenil are the only drugs to treat Hughes so that why I'm asking so the more I can learn on my own the better.

    Thanks

    Scott

  • Where are you located? Supposedly Dr schoefeld? In Colorado is good, but she has a very deep wait-list, may be worth your consideration. You can always call to be put on waitlist and be put on it from now in case time passes and you still need someone. Again, good luck.

  • I have a specialist and my Inr is kept between 4 and 4.5 which he supports. My Heamo has pretty much washed his hands of me as I refused to follow his advice and keep the range between 2 and 3. I currently self test every second day although for the past month have tested every day to see exactly what was going on. My diet is consistent and yet once every 7-10 days my Inr either drops or rises by around 1.5. I take Warfarin and low dose Aspirin as even at an Inr of 4 I still had a third stroke, relatively minor but still a stroke which A&E refused to accept, told me it wasn't possible until confirmed by Mri. My specialist did prescribe Plaquenil but I don't take it, I really can't see what I would gain by taking it so I don't. Point is we're all so different, I don't have most of the symptoms most people complain of, lucky me hah, no because the one symptom I do have is I have strokes, full strokes not Tia's, I know I've had three but my specialist after studying my Mri's says I've had around 30 and have cerebral small vessel disease, deep joy. I have no symptoms of these problems, no memory issues at all, no brain fog, in fact my Doctors always comment on how well informed I am and how sharp I am.

    I'm apparently a rare but not unique case.

  • You may well find that you should have taken Plaquenil because it does not just help with aches and pains and fatigue, it's main benefit is that it has anticoagulant properties, so for someone needing such a high INR with repeat strokes, you should consider taking it.

  • APsnotFab,

    I did not know that Plaquenil had anticoagulant properties also! I thought that drug was used when you were not only Primary APS. Do you have a paper about it perhaps?

    Kerstin

  • For you and there are others too

    ncbi.nlm.nih.gov/m/pubmed/2...

  • You are fantastic! Thank you very much.

    Kerstin

  • It has side effects that I don't want.

    If I need further anticoagulation there are other drugs that don't have the same effects. So no I want to keep my drugs to a minimum so adding more to the mix is not what I want on the off chance they may help.

  • You pays your money and you take your chances!! It's up to you what meds you take but increasing anticoagulation at your level runs a much higher risk of problems than taking a low dose (200mg daily) of a medication which has become a safe and trusted option for people with this disease. It's even now used in pregnancy which shows how safe it is!

    If you have never taken it how do you know if you will have side effects?

  • Because I react badly to virtually every drug given to me and I currently feel really well and will not risk going backwards. I have had more energy and motivation in the past few months than since before I was diagnosed. I haven't taken antibiotics or headache pills in over 30 years for the same reasons. I've stopped the Morphine for my knees too as I'd rather deal with the pain than the side effects of the drugs. I have just single handedly completely refitted my downstairs loo, my utility room and my conservatory something I could only dream of 6 months ago. I'm on a roll and long may it last. I used to be a whizz at diy and thought the ability was long gone, it's taken longer than it would have done previously as my knees are shot but I've paced myself and I've completed it and it looks really good, I'm proud of myself.

    I won't take statins for the same reason, yet another alleged wonder drug that left me virtually unable to move. We're not all the same, what works for one doesn't work for another.

  • This posted in wrong spot, was suppose to be posted 6? Spots up, I agree, I have also been told they have found the Plaquinil helps to decrease the antibodies from producing. I do know my physician told me my "levels" have decreased: I believe she was speaking of LA, Igg, Igm? I'd have to look it up....

  • There are many studies showing Plaquenil lowers aPLs.

  • Hi yes you're right hydroxychloroquine affected my platelets at 400mg. when I had ITP. ,I had to drop the dose straight away. Elfie

  • Tucson,

    Lucky you!

    Kerstin

  • Hi Tucson,

    I listen to what prof Hughes and also APsnotFab says and my Specialists as I know they know what they talk of! They have known me also for at least 10 years.

    If you also have a Specialist who knows what he talks of, perhaps you should take Plaquenil as suggested.

    Especially as you had a stroke when on an INR of 4.0!

    I have all the three antibodies in high titres and have a high risque of tromboses. I know that. Are you also triple-positive with high titres?

    I agree with you that you should not take too many unnecessary drugs as to the sideeffects and also when you are on Warfarin.

    Kerstin

  • I'm under professor hunt and her team so yes I have a specialist who knows what they are talking about. I do not intend to take plaquenil and they are aware of this, they see my point too.

    No I'm not triple positive and no I do not have high titres never had any other thrombosis issues apart from the strokes. I have no other symptoms apart from strokes and now they are querying whether they are down to Aps or the small vessel disease. I have to have more tests as the last lot of bloods showed very high platelet count but it will no doubt disappear of it's own accord the same as the Polycythemia did.

  • My friend was told that plaquenil was "the drug of choice" for Hughes Syndrome by his rheumatologist.

  • It is the drug of choice for many rheumatologic diseases now but for ours, the benefits are still being discovered, so definitely a drug that should be taken if need be.

  • Thanks ApsnotFab,

    I also was unaware plaquenil worked as a anticoagulant. I am on warafin but was wondering if there are any other medicines that are used similar to plaquenil. Plaquenil really helped with a lot of my symptoms at first but doesn't seem to be helping as much. In the US basically It is said plaquenil is the only autoimmune suppressant . So is there any other autoimmune suppressant drugs like plaquenil you know about that I could research.

    Thanks scott

  • As main stream meds I'm not aware of any Scott but patients are given different medication individually depending on their set of symptoms and severity.

  • Thank you, I value your opinion and advice.

  • I take oxy's -Morphine- Gabapentin - tizanidine - Baclofen-niacin 3 times a day with most

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