Scleroderma & Raynaud's UK (SRUK)
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Rheumy doesn’t think Plaquenil works.

I am diagnosed with UCTD suspected to be Crest and Sjögrens, I am at a combined chest clinic in April as I have lung involvement consistent with minor lung disease. I have hiatus hernia am on lansoprazole and co-codamol 15mg/500mg for pain and muscle ache (my gp gave me that not rheumy!) but it doesn’t really help much. I also use hylo fresh for my dry eye. I have raynauds, extreme fatigue and esophagus involvement though this part is only minor at present.

I also suffer with IBS.

My question is last time I saw my rheumy I asked about Plaquenil and he wasn’t keen to try me on it as he said he isn’t a big believer in it working. If he felt like I do everyday he might be willing to try it !!! I feel like I’m recovering from the flu most days, it’s not good. If I try to fight through it I just end up sweating and feeling faint and poorly so I have to give in to it and lie down.

What are everyone’s feelings on Plaquenil ? Surely I can’t be expected to just carry on like this with no treatment !!

Rheumy hasn’t prescribed any treatment.

Lansoprazole was given by gp a few years ago for heartburn, I now know why.

Hylo fresh from optician for severe dry eye, again it’s all now tying together(Sjögrens)

Painkillers from gp as I couldn’t sleep with the pain

I have my next Rheumy appointment next week the 28th Feb.

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Hi,

I have been on plaquenil for three years, together with other medications. I have never felt it helps at all, but my consultant is very keen I stay on it as there is substantial evidence that it improves long term outcomes. I understood everyone is put on it from the beginning, with stronger meds to be added if needed.

Good luck with your appointment.

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Hello and thanks for replying.

I suppose I was hoping Plaquenil is going to be my magic drug to make me feel better. How does anyone live like this ??!! I’m forever laid up and I can’t fight it because I’ve tried and just end up feeling so poorly I’m stuck in bed or on the sofa again for days 😟

Thanks again for taking the time to reply and sorry if I sound negative I suppose I’m just not accepting and dealing with this awful disorder very well x

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Hi,

Don't apologise, I fully understand what you are going through. Hang in there, though, as my experience is that this illness has ups and downs, and there will come a time when you hopefully feel a lot better than you do now. Be kind to yourself, rest when you need to and move when you can, but without exhausting yourself. It is a fine line, I am afraid.

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Also, Plaquenil works very well for some people, you may be one of them. I think you should definitely push for it and ask for a second opinion if your rheumy refuses.

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I've been on it for 3 years, it took a couple of months to kick in but has helped the pain significantly and reduced the night sweats. I have Limited Scleroderma, and take Ranitadine as well for reflux as I can't tolerate any of the others. I was reluctant to start immunesuppressants and take Plaquenil, but then I met someone with Diffuse Scleroderma, she had been on Steroids for over 5 years, had lung involvement, clawed hands....she told me that her lung condition was still poor but the rate of deterioration had reduced since taking Plaquenil, and has seen a positive improvement. She then started Mycophenolate after a year on plaquenil and was convinced both had a positive impact...that convinced me, and I am now taking both, started Myco last year....I saw a big improvement in my skin involvement with Myco, and though I have to pace myself, life is more normal.

Sorry for the long post but I asked myself what experience your Rheumy has had with treating this disease, has he treated others with it with poor results? Everyone responds differently.....it must be worth trying, if you don't you will never know! I hope this helps.

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Hi Bee, HCQ is a funny drug. it is an antimalarial medication, that was found to have benefits in treating people with autoimmune conditions. It is particularly used for people with Lupus, but most people with connective tissue diseases such as scleroderma are also on it. It seems to have an effect of suppressing the immune system, which is over active in people with these conditions. It also has lots of beneficial 'side effects'...it can reduce blood sugar levels, and help the vascular system, as well as having an impact on reducing immune activity. In fact the one of the Professor Rheumatologists I worked with used to say that they should put it in the water like fluoride so everyone could benefit!

It takes time to work though. It is not a quick fix. It takes at least 12 weeks to properly get into your system and start having an impact, and then there is an ongoing building effect. Many people describe most benefit after they have been on it 6months, to a year. Some people will of course find that they experience side effects, for example, with any drug you have the risk that your digestive system won't tolerate it and some people find it gives them headaches. Although if you start on the lowest dose and build up very gradually you normally find these settle. People can worry about an extremely rare side effect, which is toxicity of the retina (your eyes). The usual protocol is to get people to have an eye test before starting and then annual check ups after that.

I hope that makes all sense.

All my best

Lucy xx

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Thank you to all of you for replying I really appreciate all your input it helps a great deal.

I was such an active bubbly person before this so I do find it difficult to pace myself and rest but I do try. Occupational Health through work have been great and the doctor there said if I don’t get any joy with my rheumatologist he will contact him to discuss a full diagnosis and treatment plan but I have to wait till I’ve been to the combined chest clinic on April 19th. I’ve had a lung function test and chest scan and they say definite lung involvement though minor at present which is good. I just think it is best to start some treatment as it takes a while to work it can always be changed as I go along.

If I still can’t get anywhere with my rheumy I will definitely ask for a second opinion.

Thanks again for all your advice.

Take care and stay well x

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Afternoon everyone I hope you are all as well as you can be.

Well I had my appointment with consultant today to discuss starting on Hydroxychloroquine, I say my consultant it was his registrar as usual !! Anyway she again said Dr Patel isn’t a big believer in this drug .....why I don’t know !! As I said before if he felt like this he would try anything. She put me on 200mg once a day is this the norm ?

My bloods indicate sclero/crest but I also show signs of Sjögrens. I had a litmus test done today and my right eye which is so sore and dry was 0mm and left eye only 2mm definitely very dry ! They still think primary sclero/crest and secondary Sjögrens but still diognosed UCTD at present they seem so reluctant to pin it down to a specific thing. This is the most frustrating process I have ever been through but at least I’ve started hydroxy now fingers crossed it works for me.

Thanks for reading

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I started on 200mg, I think they work out the dosage according to your weight. It took about 6 weeks before I felt any effect, but the pains subsided then and haven't returned. Still on 200mg. I hope it works positively for you, you may h ave to give it a couple of months though. I have a regular eye check as it can affect your eyes.

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Thanks for your reply. It’s good to know someone else is on 200mg a day and it made you feel better as most posts seem to say 200mg twice a day. I was told 6-12 weeks before I will feel any benefit but that’s fine at least I’ve started them now as I thought they weren’t going to give me them. The consultant mentioned the eyes and gave me a test to do and to let her know if I notice any floaters etc.

Did you notice if the tablets helped with fatigue at all ?

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It did help with fatigue I think, but I do have to pace myself and not overdo things.

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I hope so as work are expecting me back if this drug works ! I don’t know what’s worse the pain or the fatigue. :-(

Take care and stay well x

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