Hello everyoneJust thought i'd post this great article about a possible new treatment for Raynauds Phenomenon that a lot of us are sufferers of like myself.
An antidepressant called mirtazapine could be re-purposed for treating it. Is anybody taking the drug at the moment by any chance.? How do you find it?.
Anyway, it gives us all hope of a better treatment for what can be a difficult condition!.
Take care everyone
MistyX
Hi misty,
This is really interesting. I have Raynaud’s but at the moment am on no medication. This is because I also have low blood pressure and the medications used to treat Raynaud’s are also used to lower blood pressure. I was tried on a few, atenolol, losartan and even viagra, but the side effects were too severe. Dizziness, light headed, staggering, nausea to name a few. For now I just have to wear thick socks and gloves. Gloves are worn in the house too which isn’t the most practical thing . Maybe this medication is something that could work. Xx 💊 👩🏻⚕️ 🩺
Yes my hubby has the same issue. Someone on here recommended cream for haemorrhoids.
Thank you ge for your lovely message. I'm sorry you've struggled to find the right treatment for Raynauds because of low blood pressure. You've made me realise that i could be a candidate for it too as i have to be careful with nifedipine and have low blood pressure as well. Its not easy living with some of these symptoms. I guess the only way to find out if mirtazapine is ok is to try it. We all react differently to these drugs. One day you might be so fed up of wearing gloves in the house that you'll want to give it a go. If you do ge, do let me know how you get on. Hope you have a good week. Xx
Hi misty14,
My experience of Mirtazapine was a very bad one!
It caused my lips & tongue to swell quite severely. Also my tongue became numb & I felt extremely ‘drugged.’
I won’t ever take it again after such an adverse reaction so unfortunately it won’t be helping my Raynaud’s, but it may help others.
Thanks for sharing the article 🙂
I'm very sorry turqoise 1 that you've had such a bad reaction to mirtazapine. You certainly couldnt stay on it with those serious side effects. Good thing we're all different though as some of us with low blood pressure just might be helped. Have a good week. Xx💕
Me too - made me so doped and dizzy I fell down stairs - nearly broke my back!
I took Mirtazapine as an anti-depressant over 15 years ago, so it pre-dates my issues with Raynaud's. I think I came off it because, like others here, I had intolerable side effects. I should point out that I've reacted to so many anti-depressants that I don't really have any options left, so I am pretty sensitive! I think I gained a lot of weight in a short space of time too although, again, I do seem to be prone to that (Lithium was the worst and in the process of trying to lose the weight, it somehow turned into an eating disorder).
I think I have seen Mirtazapine used to help sleep in a few conditions and for pain, so who knows, it might be a wonder drug for lots of people!
My experience of Mirtazapine as an antidepressant was the same as yours! I piled weight on because I felt extremely hungry all the time, and it made me extremely groggy. This was nearly 20yrs ago. It joined my “never again “ list. Having said that, everyone has different experiences on meds.
Interesting that this is, as far as I know, the second antidepressant being tried for Raynaud’s. Fluoxetine is being used.
I knew Fluoxetine was used for pain (in Fibromyalgia, at least), but didn't know about it connection to Raynauds. Unfortunately SSRIs made me really manic, so I steer clear of them now.
Out of interest, is your "never again" list very long? Mine is and when the rheumatologist diagnosed with me with Fibromyalgia, which I disagree with anyway, she offered me a list of anti-depressants I've already had horrific reactions to! The worst was Stevens-Johnson syndrome after taking Lamotrigine, which I did read somewhere a while ago was connected to Lupus (possibly not a reliable source, so might all be nonsense). I didn't get so bad I needed to stay in hospital, but did have weeks afterwards where I couldn't use my hands because they were so blistered. Going by the reaction of every psychiatrist I've seen since, it's very rare - some of them almost seem excited to meet someone who had it 😂
I do have quite a list, but most of it is because I have bipolar disorder and have taken a variety of meds over the years. The bipolar disorder is extremely well controlled now by meds with no apparent side effects.
Interestingly, one of those is lamotrigine! You were unfortunate to experience such a rare and concerning reaction.
Stevens Johnson is what I had as a previously unheard of reaction to IVIG last year. But I too have list as long as several arms of medication reactions - including all the chronic pain ones and anti depressants used for pain, eg Duloxetine, Amitriptyline, Mirtazapine, Gabapentin, Pregabalin. When I saw the scleroderma professor in July he inferred that I likely had “mast cell issues”.
I hope your Stevens-Johnson reaction wasn't too bad. When I read about how bad it can be I realised I came off it just in time, I think. I had lots of bumps of the back of my head and my mum insisted I went to A&E where they thought it was loads of swollen glands. GP thought it was the start of SJS, so I came off it immediately. Then the weeks of flu-like symptoms and blistering skin came afterwards.
I've heard of some people with autism having mast cell issues. I did ask a rheumatologist about MCAS in 2022, but was laughed at... I think some psychiatrists have thought I'm being deliberately difficult, but if I didn't have a reaction they just didn't help my mood either. Only Bupropion and Lisdexamfetamine seem to help. Melatonin did help with sleep to start with, but I suspect it's making the current problems worse. I took Nifedipine for Raynauds, but that made my gums swell.
Also have various food problems, latex allergy, wool allergy (and recycled polyester now it seems) and I worked out a load of skincare ingredients I react to (dimethicone, sodium lauryl sulfate, shea butter + others). I also had a lichenoid reaction to a filling on the side of my tongue a couple of years ago, although was mostly just glad it wasn't cancer at the time. Sometimes I think my body is being deliberately difficult and just needs to stop! Even just a couple of days off would be lovely right now.
My SJS was pretty horrible tbh. My lip and oral cavity all blistered badly and my lip began to necrotise. I had to use Dermovate ointment but first had to lift up the huge scabs and try to remove so that the Dermovate could be absorbed and then it would gush blood and new even larger scans would form. I had tiny weeping blisters all over my palms as well. There was severe lichenous-looking lesions inside my mouth so I was told to rub Dermovate inside my mouth too! It finally worked. But rather traumatic experience and I spent over two weeks looking like a Halloween horror show!
A rheumatologist I was seeing privately once a year later advised me to stop using SLS toothpaste and the oral lichen planus hasn’t returned. So more commonalities there too. I just hope one day soon you and Stiff19 and others can finally get the kind of care you need just as I now do - including for my Raynaud’s (monthly Iloprost and Losartan - Iloprost not nice but severe Raynaud’s of scleroderma sucks more) XX
God yes, SLS in toothpaste was a definite improvement for me! The burning that must have been causing for ages without me realising. My SJS was around 2009, I think, so I've mostly forgotten the horrors of it, but my mouth was a mess too. And the blisters on the soles of my feet. My niece was born around the same time, as I was desperately trying to finishing knitting a blanket I was making with blistered hands. They didn't give me any advice or treatment for it, which seems pretty mad now. I think the hospital inpatient stays for eating disorders were so traumatic that it's made me forget some of the things that happened before, I almost feel like an entirely different person.
My NHS insoles arrived this morning finally, so I'm pleased about that and can finally order some shoes to try them in. Although it says "wide fit" shoes and I have extremely narrow feet, so a bit stumped on how that will work already!
My SJS was to IVIG and I realised what was happening from what happened in first round. Someone from a Myositis community sent me a Dermnet.NZ link to rare IViG reactions and a neurology registrar warned me about SJS and MCAS whike I was getting second round as inpatient.
New Balance trainers are pretty good I’ve found. They are wider at toes xc
Ah, yes, pregabalin et all for pain. My experience with them is hallucinations. It was mildly funny to see knitted men walking into the sitting room, but only while I knew they were caused by the med. Stopped it pronto in case I ended up thinking they were real!
.. ohh yes …that’s wild! Gabapentin made me see double - eg two weary looking doctors like concerned identical twins. I didn’t know which one to fire my uncharacteristic anger at but both told me to stop Gabapentin immediately! X
Sorry fredan, you had bad side effects from mirtazapine. Its a good thing we're all different and respond or not to drugs differently too. I've even tried the same drugs twice in case i could take it as our chemical make up does change over time. I hope you've found a better treatment now. Xx
Thank you Misty. I am on something better for depression/anxiety now and have since worked out I have Autism & ADHD, so getting treatment for the latter has also helped a bit.
I think most people are ok with Mirtazapine, or experience minor side effects they can live with. Aside from the weight gain, I coped surprisingly well with Lithium, which always raises eyebrows with a lot of people. And stimulants for ADHD have mostly been fine, aside from worsening the Raynaud's if the dose is too high. The thought of amphetamines was quite scary to start with, but it does just calm me down enough to help me think straight (coffee also has a similar affect on me).
Hi Misty.
Many thanks for posting the article. It will be interesting to see what happens.
I take Sildenafil at the moment which is no cure but does help a little bit.
Take care.🌻
Hi Misty,
Thank you for posting this. I most certainly will be speaking to my consultant about this. I have extremely severe Raynauds to the point where my toes go grey/black, blister and I'm totally unable to walk.
Worryingly this may have spread to my fingers now.
I've tried several meds - blood pressure tablets, Viagra and a few others I can't remember the names of.
I then recently had an Ilaprost infusion. 3 days of total and utter pain, but was hoping this would be it and I'd be better. Alas, it made no difference whatsoever.
I've now been given an angina medication to try. My gosh I hope it works. If not, I'll hold out hope for the antidepressant. Thought to be honest, after all I've tried, I have a feeling I'm simply going to have to live with the sever Raynauds pain!
When rheumatologists describe severe it isn’t due to Raynaud’s pain or colour changes - it’s the damage it can do ie ulcerating fingers and toes - basically frost bite - meaning we can lose toes and fingers. This tends to be associated with scleroderma not Lupus so much - although of course some have both. So Iloprost might be a horrible treatment for most - but for those at risk of losing fingers and toes it can be pretty important. It’s also used for people with pulmomary arterial hypertension to try and prevent this progressing. My area healthboard will only let those with nailfold capillary changes or confirmed secondary Raynaud’s get it now as it’s costly having a patient take up a bay for 3 days each time.
sorry guys I'm having problems uploading picture.
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My hubby has the same problem. Fingers go blue/black. Luckily no trouble with his feet. It really limits any time he can spend outdoors. If the temperature is lower than 20 degrees C it kicks off. His rheumy has taken him off meds for the same reason as misty14
My Mum was on Mirtazapine for years. It worked well as an anti depressant but she put loads of weight on. My cat was put on it to stimulate his appetite when he was ill!!
Hi Surferguy - sounds (by your name) as though you are someone who gets in the cold water?
Do you ever wonder whether the problems you have with your hands and feet are a result of getting extremely cold, repeatedly? (I am only asking because, although I do have Raynaud's secondary to lupus - I think I probably have some nerve damage to my toes from all year round swimming - and I don't think that has anything to do with Raynaud's).
Same thought occurred to me?
😢Hi WinterSwimmer, you're spot on. I surf in the summer months and also do a lot of swimming. But never thought whether this could be the reason for my current situation. Something I'll definitely be asking my consultant.
I did ask about nerve damage when I first had my severe bout of Raynauds but was told that wasn't the case.
Not surfing would be the end for me. Really it would 😢
Be interesting to see what the response is. If I ever mention my swimming habit to either of the consultants I see, they get very censorious... according to them I shouldn't be doing it because of the risk of developing a skin flare (leading to a kidney flare) and should remain covered up and indoors 24/7 - and be darned my mental health and overall well-being!
I'm really sorry surfer guy you have Raynauds so severely and its proving so hard to treat. Mine was like that, going black etc when i first had it with CTD symptoms as well. I was very lucky in that Iloprost infusions were very helpful. I'd also struggled to find a good drug treatment until Nifedipine which has been the best for me. Always good to have back ups to try too!.
I really hope the angina medication works and if needed the mirtazapine too. 🤞There are lots of Raynauds drug treatments although you've tried quite a lot , i'm sure there will always be something for you to try as your symptoms are so disabling. I'm glad i've been helpful. Xx
Hi. My I can see how greatly you are suffering.
I go swimming in an indoor pool once a week to help my muscles (Myositis). My nearest indoor pool is used for competitions and so they keep the temperature low. In order for me to swim in there I have to wear 3mm surfing gloves.
I have been kayaking in the sea in the Summer and have to wear thick Winter wetsuit and 5mm gloves even though it's Summer.
My consultant advised me to keep my core warm as this helps the extremities. No doubt you already know this but just thought I'd mention it.
Now the temperature has dropped I have to use Nordic heat heated gloves from Denmark. A big expense but worth it so I can get outside. Sometimes I have to pop them on indoors for a heat blast!🙃
My Raynaurds in my fingers is severe and I get it in my toes this time of year. Double socks helps.
Don't give up on your passion. You will find something out there to help - eventually.
Good luck with your treatment and keep swimming!🏄♂️🏊♂️
I would not take mirtazipine unless I had very severe Raynauds. I have seen its side effects on other people (my mother and my son) when used as an antidepressant.
The downsides you'd have to be permanently hooked on antidepressant drugs, and all the downsides that entails. Think I'd rather try the ice bath retraining the body method (If I had primary Raynauds, not secondary)
I took mirtazapine for a while, it did not agree with me at all. Gave it a few months to see if side effects subsided but always felt overly doped up and sleepy, so stopped it. Post heart attach this year, I was immediately taken off nifedipine which I found worked perfectly for me for over 30 years. After 4 months - through summer my Raynauds was getting severe so after discussion cardiologist said I could try it again. Certainly doesn't do the job anymore as it has competition with the standard post stent/heart attack meds - all aimed at lowering blood pressure or protecting the heart from working too hard while it recovers. Not sure what we're going to try next but I was told there are other drugs available - avoiding viagra for dropping blood pressure etc and similar drugs.
Thank you Tashi for responding. I am very sorry that mirtazapine didn't agree with you and you had to come off nifedipine because of suffering a heart attack. Thats really tough as it had worked so well for such a long time. Interesting that post heart problems it didn't work so well. How our bodies change i suppose?. Do hope you find a good alternative to it. There are a lot to try. I've found nifedipine to be the best drug for me so its good to learn it was effective for you for 30 years.
Do hope your recovering well, its tough what you've been thru. Take care. Xx
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