Sarah Tee Posted February 2 Author Report Share Posted February 2 Had the specific tests for hydroxychloroquine baseline. All fine. Some of the tests were surprisingly tiring. A visual field test to check peripheral vision with tiny spots of light and pressing a button was very hard as I kept “seeing stars”. It was a warm day, I had had to stop one of my OCHOS medications, and I think my blood flow was low. Then there was one to check the retina with strobing red light and a little red cross to look at. I began to get motion sickness, unusual for me, and had to stop the test. Not keen to vomit with my head stuck halfway into some expensive plastic-coated optometry machine! So I had to stop that test early, but luckily the optometrist had enough data. Felt vomitous (family word) all the way home and am wrecked this evening. Have to go back for standard eye exam and Schirmer’s test at a later date. No rush so will wait till cooler weather. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 2 Author Report Share Posted February 2 @MaineDoug, I will try to keep a close eye out for it. Now that HCQ is helping my mild joint pain, I hope to stay on it permanently, even if it doesn’t end up doing anything for my dysautonomia (providing there are no adverse effects). I don’t think anyone has ordered me Sjogren’s antibody tests. I could get it done myself. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 3 Report Share Posted February 3 @Sea otter, Sjogren’s is a sneaky disease. Initially it just seems like dry eyes and mouth. BUT all the secretory organs can be seriously impacted. And if the digestive organs, particularly the biliary tree are effected the ducts can be blocked by stones or sludge, causing a backup of digestive enzymes which can permanently destroy the organs, liver, gallbladder and pancreas. Symptoms can seem like IBS, or medication induced GI issues. If you ever have stabbing abdominal pains with messy oily floating stools, get to an ED and demand a work up for acute pancreatitis or hepatitis! I’ve had severe seropositive Rheumatoid Arthritis and Sjogren’s for 15 years and I just learned about this common link with the GI disease! If I’d known earlier I would have ensured things didn’t progress so far! Glad the HCQ is helping! Best wishes, Doug Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 3 Author Report Share Posted February 3 @MaineDoug, I will keep an eye on the GI side of things. I’m sorry you didn’t find out until recently and hope your new medication is working. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted February 7 Author Report Share Posted February 7 Folks, I have decided to take a break from posting for now. I am going to try to have some "time off" from thinking about being unwell ... not that I can really do that, of course. Even now I'm having dental problems that have to be sorted out (I can't tolerate local anesthetic any more) and I am having trouble with vasodilators and have to see a new specialist (a chap who knows a lot about hypertension medications). Even had a minor bout of hyperkalemia, which wasn't pleasant. I will come back and report when I have something definitive to say. My wrists are continuing to improve and fingers crossed (ha ha) my OI will also respond to Plaquenil and I will find a vasodilator that I can tolerate. Best wishes to everyone in the meantime for upcoming surgery, appointments, work, family or just doing everyday things when you can! Sarah xx Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 7 Report Share Posted February 7 Wish you good luck! Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 2 Report Share Posted April 2 @Sarah Tee how has the rest of your trial been going so so far, have you reached the three month point yet? have you still found most of your side effects subsided in the first two weeks or so? Or have more appeared? I only started my 200 mg pill this past Friday and Saturday night, but unfortunately, about four or five hours later, started to experience more dizziness and lightheadedness. It was worse after the second night and continued to grow worse the next day, and I woke up more faint and then had weird stomach upset and increased faintness and dizziness…Even later the next night , about 24 hours after my last dose. I only took two pills and stopped, but the side effects seemed to continue to worsen the next day. I know it has a long half-life so I don’t know if only taking two pills if you can still feel pretty sick/flared from that in the following days or weeks after? i’m waiting to hear back from the rheumatologist. I was thinking of asking for 100 mg pill and to take it every other day to start. It doesn’t seem they go down to 50 mg here. but if it messes me up this much and lasts a long time in your system even after just two pills I’m not sure if I’m gonna make it through the trial. And if working up from a lower dose would even help at all or if I’d run into the same issue once I hit 200 again. It really stinks I’m so medication intolerant! I had really high hopes for this one. 😞 I wish there was a way around the medication intolerance but every doctor I asked said there’s nothing I can do. I even took that genetic test for medication and it was not helpful at all. Oh well. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 2 Author Report Share Posted April 2 @Caterpilly, don’t give up just yet. Could you cut a 100mg pill in half? From what I’ve read and experienced, your body does adjust and side effects can subside, so it’s still worth starting low and gradually increasing. Just because 200mg didn’t go too well for you straight away doesn’t mean you won’t be able to work up to it. I definitely couldn’t have tolerated 200mg in one go on day one, but now I take 100mg after lunch and 100mg after dinner with not too much trouble, just a slight GI disturbance that I can put up with until I see whether it works, and that will become negligible in the scheme of things if I feel better in other ways. So I would suggest taking it after main meals and splitting the dose once you get beyond 50mg. And make sure to have foods that are easy for you to digest. I did a low-residue diet to provide a cushioning effect. That’s because I used to follow that diet after I had my bowel surgery and it works for me. Your “easy to digest” foods may be different, of course. Many people recommend oatmeal or porridge as having a calming effect. *** I do understand reacting to things or always getting side effects. I’ve been there too with other medications that I had high hopes for. However, I have no colon, so I hope that if I can get used to HCQ, so can you. Take care, Sarah Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 2 Author Report Share Posted April 2 I’m approaching three months but I can’t report yet on whether HCQ has helped me because of some other stuff that has been happening. I just found out that I’ve been feeling awful due to some kind of reflux thing, maybe due to another medication, maybe due to problems caused by my old bowel surgery, maybe both. I have started an OTC antacid and made some changes to my diet and how I take my other medications, and am going to seek advice shortly on what else to do. Discovered it by chance. Would never have guessed and I doubt doctor would have worked it out either as it didn’t seem like reflux and I just thought I was getting worse generally and would not have mentioned it as being new. It manifested as feeling completely hideous on waking, but no specific symptom I could describe. That hideous feeling is gone already, and now I’m just back to good old OI fatigue etc. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 2 Report Share Posted April 2 @Sarah Tee OK thank you for the suggestions and update. Sorry I didn’t see the other post above before where it said you were taking a break. For some reason when I saw the thread, the last post was from like January? So apologies if you were trying not to respond, but I appreciate it! The pharmacy told me I cannot cut the 100 mg pill because of how it’s designed with the coating or something? But it looks like 100 mg pills at least exist here I just might have to not get them through my insurance for now. And that’s true maybe splitting the dose 100 mg twice a day might be better than 200 mg one time a day. If my body can adjust to even that extreme dizzy, etc. stuff then yeah it would be worth a try. Main problem is I live alone and can only access super limited help , so it’s not safe or practical for me to be getting even worse from side effects since I’m barely hanging on as it is. But I know I really don’t have much of a choice so it just depends how bad side effects get and for how long. It got to a more scary point after just 2 pills and I knew I couldn’t take it increasing any farther than that so that’s why I stopped, but perhaps starting lower and slower might circumvent that. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 2 Report Share Posted April 2 @Sarah Tee sorry to hear about all the extra stuff you have going onto and that making it even harder to know the medication is doing. I can relate! Part of the problem I’ve been having is things have been so bad this past year that my baseline is just spiraling and I just keep getting worse and worse and so now as I try treatments I can’t tell what is me or what is from the medication possibly.it’s just a mixed up mess! But that’s great if you think you figured it out at least. That’s something! I saw that hydroxy. is supposed to be taken 4 hours away from any antacid. I’m sure you already know that, but just in case because my doctors and pharmacy often don’t tell me anything, and I usually just find out myself on drugs.com. Including negative interactions, which is really frustrating. It’s true you have to figure out everything yourself and it’s hard because we’re already so wiped out! anyway, I’m on famotidine, and I still don’t officially know if that counts as an antacid or not. I got mixed answers. I know it’s technically an H2 blocker, but I don’t know if you have to take that four hours away, so I’m just gonna try to do it just in case. I think it just might reduce the effectiveness of the hydroxy if taken too close together. well, thanks again for your response, and best of luck to you as you continue on! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 4 Author Report Share Posted April 4 @Caterpilly, I didn’t know about taking the antacid separate to HCQ. I will make sure to do that. Sorry to hear you can’t cut the 100mg in half. It’s quite possible I wasn’t supposed to do that either. I just checked my tablets and they are not scored down the middle. Oops. I only did it for a week so hopefully no harm done. No worries about replying on this thread. I am checking alerts/posting again now. The hot weather in Australia and the wait for some testing was making me very stressed, but it’s now cardigan weather and my test is happening soon, so I am feeling a bit better. I do understand about being on your own and having to manage. I am on my own some of the time and always seem to get sick when no-on else is here, or at night when I don’t want to wake anyone up. I do hope you find something helpful soon. I understand the feeling your illness is getting out of control. Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 5 Report Share Posted April 5 @Sarah Tee glad the antacid tip was helpful! And I know what you mean about the heat. My symptoms get even more horrific in any warm setting. Hope your upcoming test goes as well as possible! as for the 100mg… I heard back from the rheumatologist and even though the pharmacist told me not to do it, the doctor said he has his patients do it, and he thinks the worst part is just the bitter taste and of course you can split the dosage unevenly because it’s not scored. he said 100 mg tablets don’t exist but I saw them online and I even called a local CVS to double check and they said they can get them. It looks like it was something new that came out in recent years but I’m waiting to hear back if he can actually get them or not. He suggested me going down to 100 mg once a week and then slowly working up from there to try and build a tolerance. but now I’m dealing with some other medical issues and have to start some other medication so plaquenil will be on hold once again. Ah well. My Gammacore trial just expired, and I was wondering if it was just starting to do a tiny something… Even though I still feel like trash I had to push through a lot this and last week and don’t even think I would’ve been able to push through that with how I’ve been doing in recent months, so I’m not sure if a small change was starting to happen. I’d need more time to experiment. So now I just have to decide what device to try next since gamma core is so expensive. I did get an Amofit so I’ll probably try that next. I don’t know if it’s just a fake placebo device lol but so many patients online have gotten benefits from it apparently that I just got it. Truvaga supposedly delivers the same exact stimulation as gamma core. They’re made by the same company and I just heard Truvaga is supposed to come out with a new version that you don’t have to keep refilling, that you can have unlimited uses, which is what I would need because I want to experiment with it for a long time. I think if vagus nervous stimulation is going to work in me It might take my body a very long time to show any benefits. So I want some thing I could play around with for a while. thanks again for your input and hope all your upcoming stuff goes well! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 5 Author Report Share Posted April 5 @Caterpilly, I am so silly at the moment. I just checked my tablets again and they are 200mg. I must have cut them into quarters at the start. My brain is a mess! Sorry for giving you wrong info. (For what it’s worth, I did not notice a bitter taste when taking partial pills.) Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 5 Report Share Posted April 5 Ha, wow, you cut them into quarters, you got skills! I would’ve ended up with a pile of dust lol. My rheum got back to me tonight and called in the prescription to this discount mail order Rx company that shows they have the 100mg. So far it looks like the order went through but I guess we’ll see what they ship me! It’s good to know you didn’t have a bitter taste though if I wind up having to cut them. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 5 Author Report Share Posted April 5 13 minutes ago, Caterpilly said: Ha, wow, you cut them into quarters, you got skills! I would’ve ended up with a pile of dust lol. My rheum got back to me tonight and called in the prescription to this discount mail order Rx company that shows they have the 100mg. So far it looks like the order went through but I guess we’ll see what they ship me! It’s good to know you didn’t have a bitter taste though if I wind up having to cut them. Oh good! I hope they come through. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 5 Author Report Share Posted April 5 @Caterpilly, I cut a tablet in half and swallowed one half as normal, with a small glass of water – no bitter taste. But then I put my tongue on the cut edge of the other half, and it does taste slightly bitter. So if you swallow a cut pill as normal, not bitter, but if you have trouble and it stays in your mouth for a bit longer, it is slightly bitter. But nowhere near as bad as steroid tablets, for instance, which I found I couldn’t swallow fast enough to avoid a very bitter taste, even when they were whole. Sorry I seem to have managed to get everything wrong! Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 5 Report Share Posted April 5 No worries! It makes sense actually. And yes, those steroid tablets do get bitter quite quickly. I can’t avoid it either. Good to know the hydroxychloroquine isn’t as bad. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 10 Author Report Share Posted April 10 It’s my review appointment today after three months of HCQ. I have seen improvements in pain in my hands on weight-bearing activity. I am not sure whether there have been any improvements in my OI symptoms, but I am going to fudge it a bit and say there have been because I don’t think three months is a long-enough trial. Also, the three months were over our hot summer, and I recently discovered I had had some kind kind of reflux (probably from other medication) which muddies the waters. I have only sorted out the reflux this last fortnight. Additionally I have spent the last few months wrestling with my specialist to order my Doppler scan, which has had my stress levels really high. So it has done some good, maybe not where I was hoping, but it’s been hard to tell and I need to try another three months at least. Also, I am going to be rather brave and ask the rheumatologist about low-dose naltrexone (LDN). He specifically said he did not want me to try anything that compromises the immune system, which is why he won’t be prescribing anything stronger than HCQ. Well, LDN does not compromise the immune system, and is fairly safe to try, so I will try to use his own words to convince him. Apparently LDN can be taken with HCQ. Fingers crossed! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted April 11 Author Report Share Posted April 11 Well, my appointment went better than I could have imagined. I am to continue with HCQ, and my rheumatologist is going to try me on low-dose naltrexone (LDN) as well. Not only that, he is going to email Dr Novak and ask him if he has any of his autoimmune-type OCHOS patients on immune treatments, and if he can suggest anything. Woo hoo! Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted April 11 Report Share Posted April 11 4 hours ago, Sarah Tee said: Well, my appointment went better than I could have imagined. I am to continue with HCQ, and my rheumatologist is going to try me on low-dose naltrexone (LDN) as well. Not only that, he is going to email Dr Novak and ask him if he has any of his autoimmune-type OCHOS patients on immune treatments, and if he can suggest anything. Woo hoo! I tried to reply before and I thought it went through but now I don’t see it… Anyway, basically just said glad it went well, seems like a good appointment and definitely worth a shot to try the LDN! Quote Link to comment Share on other sites More sharing options...
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