PR, BuTrans, Hydroxychloroquine Anxieties & A General Update :)

Such a lot has happened in the last few weeks!

For those that don't know I have finally been diagnosed with Palindromic Rheumatism, (a rare form of Rheumatoid Disease for those that don't know), after fighting to get a second opinion and being fobbed off initially with a wrong diagnosis of Fibromyalgia. I knew that Fibro was wrong and have known for months through my own research, that it was PR, but having it finally diagnosed a couple of weeks ago was a massive relief.

I am currently on BuTrans patches, which after a bad initial few days I am now tolerating well, but it's not doing much for my pain. I still have daily breakthrough pain that peaks around an 8/10 so I have to take extra pain meds on top most evenings when my flares peak. What are your experiences with BuTrans?

My rheumy wants to start me on Hydroxychloroquine next time I see her, and in the meantime have been instructed to take high strength fish oils as in some people this can help.

The reality of treatment, the side effects and the impact it will have on my life is starting to sink in now and my new anxiety is how I will cope with work and life in general in the early days when I start Hydroxychloroquine.

I've not heard much that is positive about it, people generally seem to say it takes at least 6 months to work and only works partially for a short time.

What are you experiences of Hydroxychloroquine??

Big love to you all, and if you'd like to chat on Twitter, you can find me here: twitter.com/tHe_PaLiNdRoMiC

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  • Hi on the plus side I have had very few side effects from Hydro. I'm on 400mg daily. I definitely get an urgent need to rush to the loo if I either take it before food, even just as I start a meal and if I take both tablets at once. I now take one with breakfast and one with lunch. i prefer not to take them in the evening as you aren't supposed to use antacids less that 4 hours either side of a dose. I sometimes get indigestion in bed.

    On the negative side I don't think after 6 months it has helped much. Difficult to be definitive though because I'm not sure how much the illness would have progressed if I wasn't taking it. Always remember that it does help some people who maybe don't use this forum as they are feeling so well. Good luck with it. Mary

  • Hi Mary

    Good point, I think if people are generally feeling well and able to get on with their lives, they might not need as much support so could be less likely to be on, or actively using forums like this. I've honestly not heard from anyone who has said that HXY is good/works though, so it is a concern.

    It's good to hear you've not had too many side effects though, that does make me feel a little better.

  • HCQ was the first DMARD I was prescribed by a Diagnostic Clinician before my first Rheumatology Consultatation but as I was also prescribed celecoxib, steroids & pain relief it's difficult to determine how soon the HCQ took effect. I was prescribed a daily 400mg from the start but I've read others starting on 200mg & it's generally given as up to 12 weeks to be noticeably effective so I would work round that. I had mild headaches & light sensitivity but nothing more & certainly nothing rotten enough to interfere with anything I wanted to do. It certainly got me walking more like a human as opposed to a waddling duck! Had it worked for my RD I'd have continued on it. As it was it didn't but I gave it a try for a year on it's own & 2 more as double therapy with MTX. It's recommended that an eye exam is done before starting & yearly whilst on it, in the UK anyhow.

    I've had some success with BuTrans, starting on 5mcg & now on 10mcg, next step 15mcg but delaying that as my GP has just increased my amitriptyline & wishes to see how that goes first. I'm certainly getting more sleep than I was 2 months ago & I see her again in a month to increase the BuTrans if necessary.

    I'm sure you know Shelley but anxiety over an unproven med won't help! Please try not to focus on side effects you may or may not have or you risk imagining them & given that your Rheumy has prescribed it for your particular form it might just be that HCQ will be helpful & allow you more freedom!

    If you want any more detail don't hesitate ....ask. ;)

  • Thanks for your response.

    Yes you are totally right about fretting too much, i'm just trying to figure out realistically if i'll be too dizzy or sick to drive in the first few days/weeks as I need to plan work etc. so I guess i'm anxious about it affecting my ability to get into work more than anything.

    The side effects you describe sound more than manageable, I do feel a little bit better after reading that for sure! I've not read up on the side effects and am just going on what i've heard from others, I am prone to worry so I now don't look at them and my partner does instead and I just report anything to him instead :D

    I hope it does work! I take every new drug with the expectation and hope that it WILL work, but I don't want to be disappointed if it takes longer or doesn't make a sizeable difference.

    Thanks :D x

  • No point trying figure out whether you'll react to a med either positively or negatively really. All you can do is go with the flow & see how it pans out & if you do have any side effects then work out if they're not worth putting up with v benefits they give you, that's how I approach any new med. If you give it enough time & it's still too disruptive then the med's not worth the side effects it causes.

    If you've been searching on forums it's always worth bearing in mind they might be concerned people, like yourself, newly diagnosed, often haven't had the class of meds before or of course there are those who are struggling & reaching out for help in a worried state & imbalanced views can be posted. I would advise anyone to read the patient info leaflet but bear in mind that each med has gone through rigorous testing & trials before being licensed for a condition so the findings of any side effects can be listed, as the law insists. Common sense dictates that you won't have them all, if any, but it's necessary to be fully informed & you may be unfortunate to have one or two but at least if they're common ones you'll know. Another member recently wrote something along the lines of "have you ever read the leaflet in a packet of aspirin?" ....well!!!!

    From my perspective HCQ was a good drug & I persevered with it but my RD needed more help & MTX does that. My x-rays were starting to show further erosion & the reasoning behind my Consultant choosing to hit it harder in the hope of stopping further progression, which it has done for most of my joints excepting my feet. This is one reason I disagree with the DAS28 which is performed here but I'm wandering down another grumpy lane there!

    I think all you can do is what most of us on here have done & just suck it & see but remember your Rheumy isn't giving it you for no reason!.....& give it time to work, no DMARD is a quick fix, they all require patience & it depends on the dose & what they're tackling!

    How do you find the BuTrans on the whole & what dose have you reached? How would you compare it to other stronger pain relief. Your turn to help me a bit now lol! Payback time! ;) x

  • Thanks nomoreheels. Good advice as always!

    I'm not so concerned about it now but have advised my boss I may need to work from home for the first week or two when I start, so he is aware and can plan client meetings and pitches etc. around me.

    I started using BuTrans 12 days ago. I started on the lowest dose which is 5mg.

    For the first 3 days I was extremely dizzy, had a banging headache, felt groggy and got waves of hourly nausea. I had already been warned I would not be able to drive, so I had arranged to work from home for that week, but I was back in the office on Wednesday after working from home for just 2 days.

    On day 3 I was back at the gym, driving, and feeling pretty much normal. It's supposed to work pretty much straight away and if there is no reduction in pain after 3 days you are meant to review it, my GP gave me a week and I saw him on Monday night having then been on the patch for 8 days (day 1 of my second patch). I was unsure as to if it was helping, however, I am in a full flare currently, and whilst my stiffness and aches are still as bad as ever, when i'm in a flare, my pain usually peaks a couple of times a day, mid afternoon and again in the evening when I get home from work or bed time. My pain spikes usually last several hours and take me up to an 8 or a 9/10.

    I am still having pain spikes (or breakthrough pain) so I have to take an extra oral dose of Buprenorphine when this happens, which turns me into a zombie, so I can only do that at night once home, BUT this week, i'd say I have definitely noticed that my spikes are not as bad, paired with an extra oral dose as and when needed, my spikes only last about an hour now and are not as severe.

    So, on day 12, i'd say that yes. I think BuTrans has taken the edge off my flares and whilst i still feel pain, it's dropped by 1 or 2 on the pain scale, my 9/10 spikes are now 7/10.

    I get occasional mild waves of nausea (several a day that only last a few minutes), but now I don't think I have any side effects and seem to have tolerated them very well. That said, when I change a patch, for the rest of that day I feel terrible. Instant headache, groggy, sickness and extreme dizziness which usually subsides within about 12-24 hours of putting the new patch on.

    I hope that helps?

  • You're fortunate to have an understanding boss. So many don't get just how some of our meds can affect us, according to other member's posts anyhow, but I guess it's how big the Company is, how valued you are, if your position allows you to work equally well at home, etc so that's great for you & it must help when you're going through a grot time like now whilst you're finding the correct meds & doses.

    Thanks so much for sharing your experience of BuTrans. Sounds like I tolerated it better at the lowest dose from the get go but as is often said we all react differently & have different tolerances of both pain & meds. We also differ in that my GP preferred have monthly reviews with me staying on the same dose until the next rdview, directing my pre-scripted 30/500mg co-co's to top up before the next appointment. What may have also had some bearing was starting the 10mg ami at the same appointment & of course treating two different pain issues simultaneously &, understandably, she doesn't want to give me more than I need of either med. So... after being on 5mcg a month at the next review she upped it to 10mcg but kept the ami at 10mg & at at Mondays appointment she upped the ami to 25mg but kept me on 10mcg BuTrans in order to evaluate which med is working best for each pain. I'm not quite there with either pains (!) although the cervicogenic headaches have certainly lessened & I'm sleeping better but I'm a little reluctant to go up to 15mcg & would preferably keep the buprenorphine dose as low as poss as I have other meds that I have to consider but obviously will be guided by her thoughts.

    I'm again fortunate in that I have no additional problems when I change my patch. You are moving it around your upper body aren't you, not sticking it in the same place each week?...., just a thought!

    Your experience of it has helped.....would you be good enough to keep me informed of any issues you may have if you reach 15mcg. I hope you don't but should you I'd appreciate a nod!

    Thanks again.

  • I work in a small (only 5 of us!), digital agency so my job is ideal for remote working and the industry as a whole has a progressive attitude and is largely geared up to accommodate working form home. I ran my own web design business for 9 years from home, so my boss doesn't have any concerns over my ability to be productive whilst working from home, so yes, I am fortunate, for sure!

    Even so, I felt terrible asking, like I was failing, which is ridiculous. I am a valued part of the team thankfully, and he is happy to be flexible to keep me. It's really helped me stop worrying quite so much about my job security.

    Glad to hear your combination of doses is helping you sleep better currently. I'd be concerned about going up to 15 too. I will go up to 10 if necessary, but for similar reasons that you probably have, I don't want to go higher if I can help it! I'm also on 25mg Amy (been on these for about 20 years), so its impossible to guess what i'd be like without them, though the pain management clinic suggested I go up to 50mg.

    Yes the second patch went in the correct place on the upper body (on a different arm). My GP suggested I might have had more of the 1st patch delivered quickly, leaving me with little in my system in the days prior to putting patch 2 on, hence feeling knocked around as though it was my first time again when I put the 2nd patch on, and that could be why I was in a lot of pain on the last 3 days of patch 1.

    I know temperature and a few things can make the delivery rate of the patch increase, but again, I was very careful not to even have a bath in the first week and I stayed out of the steam room and hot tub at the gym too.

    Of course I will keep you updated, I need to commit it to memory now that you are on it so I can remember next time, or come back to you if anything odd happens if/when I go up to where you currently are :)

    x

  • Hi, just to say that I have been on hydroxychloroquine from the time of diagnosis, over 5 years ago, along with MTX. I have always been on 2 × 200mg per day, one first thing, the other with my bed time meds.

    I can honestly say that I have never had any major problems with it, unlike the MTX! Just like most of our meds, it takes a while to have any effect.

    I hope you have the same experience, and that it really helps you. If I stress over things it definitely makes my RD worse, so I hope you can be reassured that lots of us get on ok with this drug, and feel more relaxed about it.

    Best wishes. M x

  • Brilliant, thanks hatshepsut, so good to hear something positive about it!

  • Hi I have palindromic like yourself I take 200mg hydroxychloroquine everyday and mtx weekly , I have been taking these for 9 weeks and I have no flares ,no swelling and my blood levels are all normal now . I have no problem with hydroxychloroquine only slight nausea sometimes ,but with the mtx I have been really sick I've had to start injections .i feel the hydro really helps :)

  • That's great to hear! Thank you Chocnbags! :)

  • Hi forgot to mention earlier that I was told to have an eye test before starting hydroxy because of a extremely rare side effect which can effect sight. I was told to tell optician that I would be starting hydroxy so they have a baseline of my vision.

  • I have classic RA, not your one, and I take MTX, Hydroxy and Sulpha which keep it fairly well controlled. Indeed, last year I felt so good that I persuaded my rheumy to agree to me starting to drop doses of hydroxy/Sulpha. I wasn't hugely sure that they were doing that much and was feeling that over 80 pills awake was just too much.

    What a bad idea that was! With a week of so of dropping one dose of Hydroxy (ie 200mg a day rather than 400mg) I was flaring. So it does work. It's slow and subtle, but I have few side effects from the drugs. Needless to say I'm back on the max doses again.

    In terms of the risk of eye problems with Hydroxy, there's quite a bit of research that shows that it is unbelievably rare in people who keep below a lifetime dose of 1kg - which is 2 tabs a day for nearly 8 years. So with palindromic I hope you are in the 15% of people who recover completely after the first bout of it and never have it again so will be well below the lifetime dose.

  • Thanks helixhelix.

    Sorry to hear you had problems when you started to drop a dose and good to hear that it works and you don't have many side effects.

    I've had 4 flare cycles so far this year and it's showing no signs of spontaneously disappearing, but I live in hope! :)

  • I've been on hydroxy since diagnosis in may. No real issues with side effects though I would say my eyesight has got a lot worse this year. Can't really tell if its done any good. Had big issues with methotrexate and lungs so stopped that recently and just starting sulfasalazine increasing doses weekly. Still on prednisolone and my ra still suffering every time we lower doses. I'm on butrans patches too currently 10mcg but also on many other painkillers for breakthrough pain. Most days I spike to 10/10 pain. Unless I do nothing at all. Single mother of 4 so its difficult to get any balance of pain relief without overdosing myself. Resting pain level is about 6-7/10...that's about as good as it gets since this disease took over my life so I'm really praying these meds start helping soon!

  • Thanks orchidcass77. Sorry to hear about your eyesight, that is a real worry, but i've heard that once you stop, vision can return to normal again?

    Your daily spikes despite all the meds sounds absolutely terrible! I'm thankful I only spike that badly a few days each year and am generally much lower pain wise than you, generally around a 3 or a 4 which I am learning to cope with and regard as almost normal now.

    Really does sound like you have it bad, I do hope the meds start doing their job and are more effective for you very soon! x

  • Thank you Shelly. It is sad how we come to consider a chronic pain as being normal, mild or extreme its never fun when a 4 or 5 is to be expected. I was shocked by an extreme and rapid onset but I do pray one day I will not be so disabled by this disease x

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