Raynaud's Please Help : My primary... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynaud's Please Help

BertieB_280616
BertieB_280616

My primary Raynaud's is getting worse. The pain I get is unbearable, my hands and feet are in agony. My hands freeze in position and my feet curl inwards and I struggle to walk with the pain. I also get pains daily around my body. I have tried paracetamol, ibuprofen and aspirin for the pain but no effect. I was prescribed cocodamol but I took a reaction to the codeine. The GP hasn't put me on anything else even though I explained I'm in agony. What can people suggest?

20 Replies
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Ask your GP to refere you to the pain clinic. I was put on morphine patches, although they didn't work for me, I am currently waiting to go to the pain clinic to have injections hoping they work, but anything is worth a try. Good luck x

I have secondary raynauds, and have fairly severe raynauds. I can't take the medications due to the side effects. I would ask for a referral to a rheumatologist anyway, as they will deal with primary raynauds, and they may be able to prescribe sildenafil and possibly intravenous iloprost. Also ask your GP for an ANA blood test to rule out any other issues.

I see a rheumatologist and suffer side effects from medications. I tried sildenafil a while ago and I couldn't eat or drink anything on them. I had iloprost last year and suffered with migraines, nausea and it made me feel really ill for weeks after. My ANA blood work was negative. I am being referred to see another specialist in Dundee in March.

I have the same issues as you, I won't have iloprost unless I have an ulcer, and won't tolerate the other mess. You could ask about Prozac, that is also a treatment. Other than that all you can do is put as many layers as possible, and get some hand warmers.

I have tried so many layers. I find the more I wear the worse my circulation can be due to the restrictions. It gets so bad my boyfriend has to carry me at times as I can't walk properly.

You need to see if you can alleviate the Raynauds rather than putting up with or trying to take away the pain. There is good advice on the SRUK website about trying to prevent Raynauds - if you don't control it you are more likely to get other problems with chilblains, ulcers etc. Talk to your GP about this - for example I am o losartan (low dose) to help try and keep my capillaries open and also sildenafil because I get ulcers which are then slow to heal due to the lack of white blood cells / poor circulation. Try and take 'avoiding action' as soon as you feel the cold setting in and that helps prevent it getting painful.

Hi Bertie,

Sorry to hear you are suffering so badly. Let's just say;”I know the feeling well"!

I have been on many different pain killers, the only thing that works for me is a combination of two: "Longtec" which is a slow release form of Oxycodone and a liquid called "Shortec" which is also Oxycodone but it works at the time of taking. Currently I am taking 20mg of Longtec and between 5 & 20mL of Shortec every four hours depending on how servear

the pain is at the time. Great! Says everyone. There is a potential problem Bertie. My guess is you will have to go to war in order to get the stuff.

Your doctors will tell you how addictive it is and how awful it is to come off of the stuff. Well, my answer to that one is always the same, If it gets rid of the pain I don't care. If it gets rid of the pain then why would I want to come off of it? It works but there, as in most things to do with this illness there is a BUT! You may have to stamp your foot a lot but that combination dose work for me. Also, be aware it dose make one sleepy when you first start it and it is a class "A" drug so you need to keep your prescription with you otherwise there is a potential of getting your collar felt if you get pulled over in your car for any reason. Oh, and it doesn't taste great either, though it is available in capsule form, that said the capsules tended to upset my tum.

Worse case, should your quack say NO! You could try (I have) Tramadol, Gabapenten, Progabalin,.

If you aren't already on it I would get some "Hydroxychlroquine" as that will undoubtedly help your cause also.

Good luck with it Bertie. I really hope you can get the balance that suits you, killing the pain without knocking you out and away with the fairies.

All the best. Take care. Mark.

Hi thankyou for the reply.

I work in a pharmacy so I am aware of the many options for pain killers out there. My GP seen how upsetting this is for me and turned round and said use paracetamol. Even though I explained I had tried the highest dose you can take daily and had no success. I'm going back to the GP to try seek a painkiller as it gets too much for me. We are expecting snow any day now and I fear I'll have to miss my work.

MissusTee
MissusTee in reply to MFC911

Hydroxychloroquine is a disease modifying drug for autoimmune conditions such as scleroderma or lupus. It shouldn't really be used for raynauds as it's not licensed for it.

Many treatments for Raynaud's are unlicensed, like sildenafil, fluoxetine. May one day be a trial medicine.

But it doesn't work on raynauds, I have it for my scleroderma and other autoimmune problems, but it's for severe joint pain and to modify the scleroderma. You wouldn't get it prescribed it's the wrong medication.

MFC911
MFC911 in reply to MissusTee

RUBBISH! Sorry, I hate to contradict you. However, when it comes to Raynauds, Scleroderma, systemic sclerosis and the like hydroxychloroquine is licensed. Has been for about two and a half years now. Anyway, who cares? I sure don't and until now I haven't ment anyone who dose. I have been on hydroxychloroquine for two years or so and I can tell you first hand and CATEGORICALLY THAT HYDROXYCHLOROQUINE DOES HELP WITH RAYNAUDS!!

This disgusting debilitating disease has to be beaten. It has distroyed my life. I can't work, can't fly, can't rid my motorcycle, can't race my cars. Go climbing, go for a cycle with the children, walk to the shops for a paper. Can't do anything that I used to be able to do. I spend all day every day (excepting the one's in hospital) laying in bed watching rubbish on the television. If I'm lucky I've got another five years. If I'm unlucky I've got six or seven.

I'm currently taking: 150mg of sildenafil, 60mg Adalate, 30mg lansoprosol, 3mg warfarin, 10mg prednisolone, colecal D3, folic acid 5mg Cetirizine 10mg, 400mg Hydroxychloroquine sulfate, 20mg longtec slow release oxycodone.

Every day, also; Zapain 30mg/500mg, Shortec 5mg/5ml every four hours. Also, 30mg Codine and 75mg Pregabalin when the need arises. I couldn't give a monkeys weather they are licensed or not. If they stop me from seizing up completely and reduce the pain to a level that I can bear without breaking down in floods of tears or going absolutely crazy and jumping out of the window (jumping! Ha! Crawling would be more like it). Then I'll take them if my well thought of, highly renowned, one of the best in the country Rheumatologist tells me to. Probably anything else that has the remotest chance of helping me as well. Legal or not! I don't care. I wouldn't wish this on anyone. It is utterly vial.

While I'm on here having a rant. I spoke to my GP the other day about getting some cannabis oil as an analgesic rather than filling myself up with all this synthetic muck. Joke of the year! Although this hopeless, useless, waistrel filled government have actually legalised it. Because it's never been used it's never been licensed.

Can't prescribe it. What a bloomin' JOKE. Like the rest of this country these days. Shambles!

MissusTee
MissusTee in reply to MFC911

It is not prescribed for primary raynauds. And it certainly doesn't help my secondary raynauds. Please do not shout at me in this way, it is extremely rude. I will not continue any further on this thread. What do I know eh, having had scleroderma for over 30 years.

versusarthritis.org/about-a...

Have you tried nifedipine (Adalat)? It's a calcium channel blocker so it addresses the vasospasm rather than being a non-specific painkiller. I find it hard to tolerate as it lowers blood pressure and mine's already too low, but the effect is magic! You take it for 2 weeks and it sorts you out for the whole cold season. Stay warm!

BertieB_280616
BertieB_280616 in reply to cagol

I have tried this, amlodipine, felodipine, listen potassium, fluoxetine, iloprost, sildenafil as well and had no results

Hi again, stick with the sildenafil and get some oxycodone would be my advice. I think it took about three months of messing about with dosage on the sildenafil before we got it right at 150mg a day. I know that is a heck of a lot but I'm 6’2" a weigh 18 stone (I put the weight on when they put me on the steroids. Had been a 34” waist since uni before that) like the mitchelin man now and getting any exercise is a nightmare with the joint pain. Sick of it!

Try Topricin cream. It is amazing and homeopathic. Also, Homedics makes a heated foot massager. Place it beside your bed to use before you plant your feet on the floor upon awaking or under your desk at work. Conair makes an infrared steam hand spa. Use it with Prossage soft tissue therapy massage balm on your hands before placing them in the spa. I have noticed when I massage or rub my hands upward from fingertips to wrist, it stimulates my blood vessels and they appear full and not constricted. Avoid caffeine, chocolate except dark, alcohol and anything that constricts blood vessels. I also take two Digestive Advantage gummies daily to flush my guts. Drink water and green tea (I like with honey and lemon or lime) Cut down on sugar. I hope this eases things for you. If not, ask your doctor about amlodipine. Feel better

Bertie, I would like to also add to avoid manicures for awhile and nail polish. Allow your fingernail cuticles to breathe and not disturb them. Especially if gel polish using a UV light, avoid. In the meantime of this, massage your nail cuticles with an oil daily.

With all due honesty, I have never been prescribed anything by my rheumatologist except to get thicker gloves, heavy socks and stay warm. There is not a lot of testing going on with Raynauds by the pharmaceutical companies because they wouldn't make a lot of money. That is their only reason to do research. It's all about the almighty profits. Also, I have C.R.E.S.T. Syndrome with limited Scleroderma. The dermatologist gave me a steroid and anti-steroid cream prescription. I alter it everyday for the hard pimple-like sores I get. I use an everyday hand cream for the Calcinosis on my joints. Until testing is done on a serious basis, we must just try and stay calm. I have this now for 3-4 years. Getting worse.

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