Scleroderma & Raynaud's UK (SRUK)

Whose taking hydroxychloriquin my lips losing grip

Hi guys was at rhumy today my lips have lost grip I can't suck from a water bottle without spilling it down my chin it's stated to annoy me that I don't want to eat r drink infront of anyone. Rhumy wants me to take hydroxychloriquin but iv always refused it this is 6 yrs and iv been offered it 3 times but I'm dubious of it and wondered does there come a time where u have to take it to suppress the immune system and am I only prolonging it? Don't know what to do!?

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Like you I put off taking meds I really did not think I was bad enough. About two years ago I decided to give it a go, but read the contra indications on the leaflet inside the box and frightened myself, so decided I definitely wasn't bad enough to be taking such a risk. I have had some really bad patches since then, each one when it passes leaves me less mobile and with other downturns that do not pass. The scleroderma is gradually getting a stronger hold on me and I have less and less control over it, so the rheumatologist was talking about meds. It seems that I can try hydroxy again, or go onto something 'more TOXIC' so hearing the options with that title attached I am back on the hydroxy. So far no horrible side affects that I am aware of, my mobility is increasing a little and I haven't had any more damaging patches or downturns. I haven't heard much on this site about this med. would love to hear other people's experiences.

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Hi! Yep I am experiencing the same but this is the first time I've come across someone anyone else - it annoys and embarrasses me too, I'm not sure why it happens? I can't whistle either (!) - so odd!! I've been on hydroxychlorquine for several years now on a low dose which seems to have stabilised some things (dry eyes improved) but it is tricky as you say to get a balance. Talking of balance , does anyone else experience 'off balance ' moments? Escalators are the worst I feel as though I'm falling backwards. This disease makes little sense to me sometimes! Such broad symptoms.

Good luck to you anyway fruitpastle

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Hi Lindyanne. I take Hydroxychloroquine And Mycophenolate.

I sometimes have a bit of numbness in my face...mainly lips and nose and my doctor says it's peripheral neuropathy which I have in my feet. I am on minimum dose of Amitriptylene for that.

I also lose my balance from time to time which is a bit scary so I always take a walking stick just in case. I'd rather that than break a hip!

I don't think I could have managed without the drugs much though I don't like taking them. Best not to read the side effects ..they can scare you but they only last for a short time usually. I have blood tests every two months with Mycophenolate so you are watched carefully.

Best of luck whatever you decide!

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Hi Lindyanne - along with all our other symptoms I too get very fleeting moments of feeling off balance. They always take me by surprise.- I have the dry eyes too. It's such a strange disease isn't it? I just say... good days bad days but enjoy the good ones best you can.

I haven't started dribbling (yet) but sometimes my nose runs without me knowing and hubby has to give me a nudge. How embarrassing is that?

It's nice to come here and have a little moan - keep as well as you can.

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I don't have the runny nose...but do have 'dribbling' which is annoying...I have no sensation of too much saliva in my mouth until I feel it trickle down my chin...grr.! Also, when I drink from a cup or have a drink from a bottle of pop, I find it coming down my chin too! I seem to have lost the knack for drinking from these items! No loss of feeling in my lips though...yet!

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Hello there, hydroxychloroquine is a funny drug...it is actually an anti-malarial medication. It was found to be effective in combatting certain symptoms associated with many of the autoimmune conditions such as Rheumatoid Arthritis, Lupus, Scleroderma, Sjogrens...to mention a few. It seems to have an effect on many systems in the body and is beneficial to the vascular system, is cardioprotective, lowers blood sugar, and of course seems to impact the immune system (although they are not really sure how) so that symptoms such as joint inflammation and fatigue are reduced. One of our rheumatologists said that they should put it in the water system, like fluoride! It takes about 12 weeks to really get into your system and have an effect, and this can then build over time, so really it can be 6months to a year to be making its most significant effect.

Obviously, like all drugs some people have excellent results and some people have little or no benefit and others get side effects, although some of these will disappear if you reduce the dose and persevere over the first few weeks. It is taken orally so gastric upset can occur in some people, and others will have skin rashes and other types of allergic reactions. People get concerned about the potential impact on their eyes as there was a study that linked it with toxicity of the retina...but this is really really really rare, and people are advised to get their eyes checked annually when on it so any issues are picked up early.

I have worked in Rheumatology for over 20 years and in my experience for the majority of people it is really beneficial.

Hope that helps with your decision.

Lucy x

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Thank you LucyJean - that's quite reassuring.

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Hydroxychloroquine is a very mild DMARD (disease modifying anti-rheumatic drug) that is commonly prescribed for a wide range of autoimmune conditions and is considered a starter drug. Side effects are uncommon and the drug has a very good safety profile. It has helped me a lot, particularly with fatigue and joint pain. The effects of a serious progressive disease left untreated are generally far riskier and more damaging than potential side effects of the drugs used to treat them. Hydroxychloroquine does not suppress the immune system significantly, I've been on it for 1 1/2 years and haven't had a single virus or infection of any kind while on it because my immune system is so overactive to begin with. Its immunosuppressant properties are considered to be very mild.

Remember that your immune system is malfunctioning. You need to consider doing what you can to control progression and damage. Serious disease calls for serious weapons to fight it - however, Plaquenil (hydroxychloroquine) is probably only about a 3 on a scale of 1-10 in terms of strength or any potential toxicity. Best of luck to you. If you do decide to try it, be aware that it may take six months or more to take full effect so give it time to work. I started seeing benefit in about 5-6 weeks which continued to increase for a good 6-7 months where things stabilized.

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Hi Fruitpastle,

Just returned from the oral surgeon at the hospital, I had a large molar taken out in October (the day after retaking my driving test due to medical reasons after driving for > 40 years, which I passed). The surgeon happy about the healing but wants the dentist to take X-rays of the next tooth as dentists use smaller X-rays. Anyway he was delighted with my progress. I told him I was concerned about my mouth getting really smaller. I told him my consultant rheumatologist said I needed to keep exercising my mouth by smiling excessively and to keep it moistured.

Just need to make sure that I don't have to go back on a soft diet again, this scleroderma is a real pain. I take mycophenolate mofetil and Prednisolone as well as a few other drugs but don't use hydroxychloriquin.like lindyanne I can't whistle either. Incidentally only tried to whistle today and couldn't do it!

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funny i did the same thing earlier when i read lindyannes reply yeh i cant whistle too

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Well guys its all very confusing because to look at me ud think I was healthy I dont really have any joint pains and can get out of bed normally whereas 3 yrs ago i was full of aches and joints very stiff I take cod liver oil and dont stress about it but its just when rhumy suggests for me to start taking it I begin to wonder. I realise we are all different in how this effects us all I do think like you, CPNS, that im not that 'bad enough' iv been told I have limited scleroderma and Mixed connecting tissue disorder

I wonder do I really have scleroderma... I know it's silly to query it, as I have severe Raynaud's and heartburn and bowel troubles and I get lupus flare ups where my hands and feet swell for 4 days with pain and I can't use them at all... but the scleroderma thing, I understand the diffuse side, where the skin is affected and fingers all change shape and mouth tightens but my mouth is loose and saggy, with no grip..and my swallow is slow and food gets stuck. I just would love someone to say yes this is what u have 100%.... instead of doctors passing u on to the nxt doctor to see what they think....I don't even really bother now asking or going near them unless for my annual echo an lung tests. The lip thing is doing my head it and i had wondered was it only age as i turned 50 last month but doc says its scleroderma...

I wish I could sit in a room full of other people with same symptoms and compare myself with them and to see if they were like me at this stage and how quickly their changes happened because here on this site there are so many that have stayed the same and havent got any worse...

If I knew for sure that taking hydroxychloroquine was going to really help me in the future, id start it.

If there was such a way that they could detect changes in the blood tests and then say right thats it its time now to take it, id have no choice lol ..but because I feel well and my hands and joints haven't got any worse I cant make up my mind..I really do appreciate ur replies il take on board all ur words and think it out .. cheers guys great to be able to chat x keep warm x

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I think you find out if it works for you by trying it; there's no harm in trying. If it's not for you after a few months come back off it. What've you lost? You say you're not "bad enough" but then list several symptoms that clearly affect you. Your decision not to try it seem illogical to me. There's some excellent answers about the drug in the replies. SSc is a changing and progressive disease - holding off treating it seems wreckless to me.

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Hello Fruitpastie - I've been taking hydroxychloroquin for over a year now. I think I've written on another post about my experience of it because someone was asking about it. I wondered why I hadn't seen it mentioned very much here as most other people here mention a different drug. So I've done a bit of research and found that hydroxychloroquin is one of the earlier drugs that was prescribed to treat our condition i.e. an immune system suppressant. Some consultants prefer to prescribe hydroxychloroquin as it has been found to be the one with the least side effects. I have to take to one tablet one day and two the next and so on - so I have to keep track of them. BUT I've had no side effects at all. Hope this bit of info will help you to come to a decision.

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Hi Fruitpastle

I have had diffuse for ten years and still here but the disease is challenging to say the least. I have a similaroroblem as l can't eat properly ( microstomia/small mouth) and l dribble drinks possibly exacerbated by the fact l sometimes can't feel my mouth very much. This may be due to the skin tightening caused by the Sclero. The small mouth can be rectified by mucosal enhancement ( fat taken from another area of the body and injected in to the mouth area but it's under a general anaethetic.) This helps with the horrible tram lines too. I have had this surgery done a few times with varying success, sadly my improvement doesn't last more than a few months and l found it a painful procedure. My hands have really clawed which doesn't help and no one in the UK has given me any hope regarding this problem. Indeed one surgeon advised ' forget the splints and live with it! Any suggestions would be most appreciated.

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Hi there, I also have scleroderma with lots of associated problems. I was prescribed Hydroxychloroquin some years ago now , more for arthritis, joint and muscle aches and pains, but have to admit I don't see any benefits from it for that problem. Have been told by my Rheumatologist it is still one of the best drugs for this condition, tell my body that first thing in the morning. It's an achievement these days just to get up and dressed. Don't want to stop taking it just in case symptoms get worse. Swallowing is beginning to be a problem, and it has the most vole taste if it gets stuck in throat !!! Wishing you all the best.

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For those experiencing the same mouth issues (and after reading these posts, I realize that I can no longer whistle)....is your tongue shorter too? My tongue is stubby now and can't reach as far as it used to. I just don't get it.

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Hi fruitpastle I take the tablet and was warned that it could effect my eyes. Well it did my eyes are always aching and dry. I have to go and get regular check ups every 6 months and the also ex ray my retina's. I have trouble with the same as you with the lips. I did not put it down to this tablet. You have made me think. I have no lips and and mouth is getting smaller. dribble a lot when drinking and eating.

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I have been taking hydroxychloroquine for 3 years with no side effects. My hands were extremely stiff and painful at times. I couldn't make a fist and ordinary household tasks were becoming difficult. The hydroxychloroquine has helped enormously.

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I've been on hydroxychloroquine for 3 months and supposed to take 2 a day with food, but it gives me a really bad acid stomach even though I take omeprazole. I lose appetite as a result and sometimes can only face one meal a day and therefore only take one tablet and I have had to stop taking it several times for a few days to rest my stomach. I am due to see my rheumatologist soon and was considering stopping it, but the positive reviews in this post is making me reconsider and carry on with it. Has anyone else had this side effect and does it go away if I carry on taking it?

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