Sarah Tee Posted January 8 Report Share Posted January 8 My notes on starting Plaquenil (because hydroxychloroquine is too hard to type). This is a big deal for me. It’s the first treatment in 19 years that gets towards the cause of my OCHOS; namely, my flaky immune system. Of course, I would also be happy to treat the symptoms, but I’m having trouble finding a vasodilator or combo of vasodilators that I can tolerate. My prescription for Plaquenil from the rheumatologist is 400mg per day, to be taken all at once in the morning with food. If taken as directed, the tablets will last 100 days, about three months. But I am starting slowly, with 50mg per day, then 100mg. I am keen to avoid the common side effect of diarrhoea. Don’t know if starting slowly will make any difference. I took my first dose yesterday and woke up this morning feeling dreadful, but I’m not sure it’s connected. I made pizza last night and slept on the couch because I was too tired to move after making the pizza! I told my dad that I felt like I’d been chess-boxing. He didn’t know what chess-boxing was. Off to take dose no. 2. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 8 Author Report Share Posted January 8 Dr Novak has stated that some cases of OCHOS are auto-immune in origin. https://www.sciencedirect.com/science/article/pii/S2405650220300551?via%3Dihub In this case study, he treats a patient with OCHOS, SFN and some other problems with IVIg with some successs. (I don’t have SFN.) I don’t know whether he has tried other immune treatments on his OCHOS patients, but am making it my mission to find out! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 10 Author Report Share Posted January 10 Three fairly unevenful days have passed on 50mg (one quarter of prescribed dose), so today I have increased to 100mg. I did get a little bit of reflux one night, which can be a side effect, but I had had a couple of glasses of fizzy drink, so that may have contributed. I am therefore going to avoid reflux triggers in the evening, which won’t be too hard. And I will avoid fizzy drink altogether and switch to decaffeinated coffee for the next few weeks. Many people describe having dizziness, nausea, vomiting and diarrhoea in their first 2–4 weeks of Plaquenil, so I am a little apprehensive. I had my colon removed many years ago due to ulcerative colitis, so am slightly prone to dehydration. Normally this only shows up if I get gastro, when I will be more affected than your average person and might need IV saline if I am vomiting. This has only happened twice in 25 years, and the hospital staff were quite happy to rehydrate me. Not like the struggle folks with POTS have! I suspect having part of my bowel missing also makes me more sensitive to some GI side effects, but we will see. Mestinon really did a number on me last year. That was a lesson to always start medications at a lower dose if possible. I can take rehydration salts etc. but spending the day dashing to the loo on top of everything else … ugh. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 12 Author Report Share Posted January 12 I made a silly mistake yesterday by taking the whole 100mg at breakfast. Felt seedy almost all day, bit of a headache, mild stomach pain, and generally off. Realised I can take two lots of 50mg roughly 12 hours apart at breakfast and dinner. Duh! Have done this today and am feeling much better than yesterday. I also read a few comments on managing the GI side effects on forums. People found it helpful to start on a lower dose, split the dose in two am and pm, and eat a bowl of plain oatmeal or something similarly bland before taking their tablets. There were mixed reports on overall timing. Some found having their whole dose in the morning was better, some found night better. Ditto for dairy products. Some found they had a cushioning effect, others did better after eliminating them (at least for the first month). I am already starting with a lower dose and splitting it am and pm. Will implement the oatmeal (actually porridge because I am half Scottish) tomorrow. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 13 Author Report Share Posted January 13 I have survived three doses of 50mg: breakfast, lunch and (late) dinner. I get a “peak of unpleasantness” in the afternoon after the second dose. Bit of a headache, muscle ache all over, feeling seedy. Lasts about two hours. A shower would probably be soothing, but I’m too tired to manage one during the day, so I just take OTC painkilkers (which may or may not do anything) and try to ride it out. I always feel my worst in the afternoon, so this may be why I feel the effects more then. I can see that taking the whole dose and falling asleep might work, but I hate the idea of waking up feeling sick in the middle of the night, so I won’t be trying that. There’s nothing to do at 3am and no-one to make me a cup of tea! GI disturbances are continuous but bearable if you don’t have to leave the house. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 13 Report Share Posted January 13 @Sarah Tee Good for you for staying the course so far. I took Plaquenil for a year ( 200 mg ) and never had any side effects, luckily, despite being extremely medication sensitive. It is not supposed to really kick in until about three months after you start it, so hopefully ( especially since you started at such a sub-clinical dose ) it will not negatively affect you. Stay the course, you may not realize the benefits for a while! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 14 Report Share Posted January 14 @Sarah Tee, Good for you! I was on Plaquenil about 12 years ago. I had to change meds due to eye inflammation. I’m prone to this, diagnosed with Uveitis and Scleritis, due to my RA. I hope you have a good therapeutic effect! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 14 Author Report Share Posted January 14 @Pistol, @MaineDoug, thank you for the encouragement. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 14 Author Report Share Posted January 14 I am now up to the full dose prescribed by the rheumatologist, which is 200mg. Managed it quicker than I thought I would. Starting to have vivid dreams, but they aren’t unpleasant. Last night I was working as a desktop publisher (an unfulfilled career goal of mine) and Grant from Mythbusters was at the next desk. We started chatting animatedly about our favourite books and how much we had in common and got told off by the boss for “Doing nothing but talking for half an hour”. (I had been watching Mythbusters before going to bed.) Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 15 Report Share Posted January 15 @Sarah Tee, That’s hilarious! I love vivid dreams! Gravity doesn’t hurt in my dreams! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 15 Author Report Share Posted January 15 Better day today. No muscle aches, almost no headache, no generally horrid feeling in afternoon. Feeling slightly overstuffed with cushioning foods (ha ha). Reading a bit about Plaquenil. Scientists don’t quite know how it works. Feel vaguely hopeful in that some of the things we know that it calms down seem to be related to abnormal vasoconstriction (and maybe vasodilation too). I cannot seem to get into reading this stuff and may have it completely wrong. A little learning … etc. etc. Has anyone written a book for the layperson on the immune system that makes it literature, rather than a jumble of letters and numbers? My dad reminded me that my Uncle Tom caught malaria while serving in the Far East after the war. My dad, the youngest brother, remembers him talking about it and sometimes being unwell after he returned to Scotland. I imagine he had to take quinine. I hope he didn’t suffer too badly. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 19 Author Report Share Posted January 19 I’m finding it a bit hard to have four doses a day separated out enough and accompanied by a decent amount of food. The last one is the problem. I don’t want to be eating near bedtime. So I tried having 50mg with breakfast, 50mg with lunch, and 100mg with dinner. But this wasn’t successful. 100mg at once made me feel blah. Back to four doses a day. Will try to get up early to move everything forward in the day. I’ll try the 100mg at dinner again in a few weeks. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 20 Author Report Share Posted January 20 The muscle aches are bothering me a bit. If it wasn’t summer, and I didn’t have heat intolerance, I would have a warm bath. It’s not even a fortnight yet – I thought it was well over. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 20 Report Share Posted January 20 @Sarah Teeare you drinking enough fluids? i have been on a few short term meds were i needed to increase my water uptake. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 21 Author Report Share Posted January 21 @MikeO, yes, plenty of fluids. I have had aching leg muscles as a side effect from several medications. I think I’m prone to it! On the plus side, no nausea or vomiting. Phew! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 21 Author Report Share Posted January 21 @Pistol, may I ask, did you take a loading dose when you started Plaquenil? Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 21 Report Share Posted January 21 @Sarah Tee No, I started on 200 mg and did very well with it. I never had any issues with it at all. I did suffer from joint pains ( but Plaquenil was not prescribed for these, it was ordered for POTS ) and I noticed improvement of those after about three months. Which is supposedly the time it takes for it to take effect anyway. I think we need to build up a therapeutic level of it before it starts working. Strangely - I stopped the Plaquenil a year ago and the joint pains never returned! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 22 Author Report Share Posted January 22 @Pistol, I’m glad it helped with the joint pain and that it didn’t come back. Funnily enough, I think it may be helping me with some joint pain in my hands that dates back about 20 years, to the same time my OI symptoms started. The muscle aches that seemed to be a side effect have settled down again. I’ve made it to two weeks – yay! Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 23 Report Share Posted January 23 On 1/22/2024 at 12:29 AM, Sarah Tee said: I’ve made it to two weeks – yay! Good job on the two week milestone. Now shoot for two more with improvements! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 25 Author Report Share Posted January 25 Thanks, @MikeO! I think I am past the worst of the initial side effects. Now to just slog on for another 2.5 months and fingers crossed it does something! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 26 Author Report Share Posted January 26 The joint pain in my hands is definitely reduced. This was not a severe problem, as it only showed up when doing weight-bearing exercise (e.g. push-ups) or when I did a lot of work with my hands (e.g. long day of gardening or cleaning). Not that I’ve been doing any of those activities lately, but before my OI got bad I noticed my hands would hurt when I attempted it. I don’t think I ever even mentioned the pain to a doctor until recently when I finally got referred to a rheumatologist and made sure to think of everything that could be rheumatological. I have had swollen PIP joints for many years, but again not painful. Just means I can’t wear rings from when I was younger. I also wonder about my hands overall, as, although my hands are average size, I can never get “one size” bracelets on. So I can now theoretically do push-ups or hand-stands. Ha! When I was younger and healthier and might have comtemplated such a thing, my hands stopped me. Now my hands are much better but I’m exhausted and out of shape from years of OI. The gods have an interesting sense of humour … Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 28 Report Share Posted January 28 THEY DO INDEED SARAH! They do indeed! I’m hoping for a strong dash of mercy! LOL! My hands are so bad that they were my secondary disability qualification per the federal judge! Vision is #1! But I can’t even sign my name with a pen anymore! And thank goodness for voice to text! Hoping the Plaquenil keeps it up! ☯️ Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 1 Author Report Share Posted February 1 @MaineDoug, I’m sorry your hands are so bad. Do you think they will improve when you can get back on biologics? Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 1 Author Report Share Posted February 1 Off for my special eye test tomorrow. I haven’t had an eye test of any kind since primary school. Will also get Schirmer’s test if there is time. I don’t think I have dry eyes now, but I want it done as a baseline in case I end up with Sjogren’s syndrome (which I strongly suspect my mum had). I also need a standard eye test. I’m approaching 50 so it seems sensible. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 1 Report Share Posted February 1 @Sarah Tee, Thanks! It’s “whack-a-mole”. It’s tax season here, and when I work on the forms, my eyes become inflamed and my vision gets very blurry. Be wary of Sjogren’s! It’s a trickster! Can cause all kind of collateral damage. It can dry all the secretory organs. It’s a risk factor for Pancreatitis. Stay on your toes. Quote Link to comment Share on other sites More sharing options...
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