Losartan for Reynaud's?

[redmaggie]

Hi, Does anyone have experience of taking Losartan for Reynaud's? I've been prescribed Losartan 25mg for primary Reynaud's. I also have erythromelalgia. Any feedback welcome!

[Heleno]

Hi, I took losartan last winter because my dentist didn't want me to take nifedepine, apparently can cause gums to inflame more and I have ongoing gum recession problems. I didn't feel it worked as well as nifedepine and my rheumatologist put me back on the nifedepine this year.

[redmaggie in reply to Heleno]

thanks for the input, I hope you have a better winter this time.

[Barnclown]

Hello redmaggie. Yes, i am on losartan for simultaneous raynauds & erythromelalgia (secondary to systemic lupus, along with lots of other typical secondaries eg sjogrens, small vessel vasculitis etc). All my primary & secondary conditions were v early onset, but progressed due to being inadequately medicated (meanwhile my self help was pretty good) . Am 66 now and quite debilitated generally, but convincingly & fully diagnosed at last + in good care with all my clinics & well medicated generally

Re me & losartan:

10 years ago, rehumatology had me try nifedipine for 3 days, which made my Erythromelalgia even worse and put me off raynauds meds for years....but my raynauds kept getting even worse so my rheumy suggested iloprost. we decided against this cause it’s so like nifedipine.

Eventually she suggested we try losaratan @ low dose. i’ve had 2 years on 2ml liquid losartan (this is equivalent to 20mg, but apparently 20mg tabs aren’t manufactured) taken @ night...and this DOES SEEM to be helping damp down my raynauds without making my erythromelalgia much worse

The make of liquid losartan my pharmacy orders in as a ‘special’ for me is:

Rosemont brand Losartan Potassium 50mg/5ml Oral Suspension SUGAR FREE 150ml sweetened with liquid maltitol

Glad to see your post, especially cause i’ve found no one on my forums prescribed losartan for RP...certainly not such low dose losartan...i have tried to run searches (but am bad at tech) and found nothing re cases like ours

Hope something in there is helpful ❤️🍀 Coco

[redmaggie in reply to Barnclown]

Thank you for the reply and all the information, Coco. I have just had a comprehensive first appointment at the Royal Free, where the Dr picked up on the reynauds being related to the EM, in cold weather at least. It is a relief to have the tests and find out both conditions are primary, and fortunatly I'm otherwise fiarly well at 62. It's taken some pushing by me to get this far (I know that is not unusual!) Im recommended the losartan to calm down the over-reactive small vessels, the less RP, the less subsequent EM is the theory. Starting dose is 25mg then trying 50mg if tolerated. We will see, I'm a light weight person so may well stick at 25mg. Ive only had a couple of doses but my mouth has dried up completely...yuck! I think the EM in hot weather is another story.....

sending best wishes, hope that you will enjoy the Christmas time and keep as well as possible. x

[Barnclown in reply to redmaggie]

Yep: my rheumy & i think EM is basically RP gone bonkers!

Am on so many heavy duty long term daily oral meds for my simultaneous autoimmunity & immunodeficiency diseases (+ CTD/AID/PID- related intestinal failure) already that i was relieved my rheumy started me on losartan @ low dose. ie long term i need daily pred, myco, hydroxy, antibiotics, amitrip + am exclusively on Elemental Enteral Nutrition (i can’t digest anything any longer) & every 3 weeks immunology’s IVIG.

am v glad to meet you & hope you’ll let us know how you get on with losartan....am light weight too! Am v much hoping losartan goes down well for you. It’s great that you’re fairly well at 62!

I’ve been researching simultaneous RP&EM for 10 years now, via official published literature, including the archives of the Erythromelalgia association, so i feel reasonably well informed. My impression is that this combo is possibly is underdiagnosed. Very few medics seem to know anything about EM.

Of course, my RP&EM are secondary...which usually means less severe than primary versions...but FOR SURE my RP has been relatively straight forward to treat effectively (so far), whereas my EM blights my life, eg has permanently worsened after EVERY anaesthetic i’ve had including this summer’s spine surgery which has made my EM become even worse.

I’ve always been gung ho on self help/lifestyle techniques and over the years have figured out some good ways to survive EM, but there is nothing easy about devising ways to survive life with this miserable 24/7 all year round RP&EM cycle!

Hope you enjoy the festive season 🎄❤️🍀

[redmaggie in reply to Barnclown]

I found this article, by Parker et al, available as a free PDF or web page. It talkes about strong association of RP and EM. Google the following: Clinical features and management of erythromelalgia: Long-term follow-up

of 46 cases

best wishes, M

[Barnclown in reply to redmaggie]

THANKS: will check this out...something about it seems familiar, but will find it & see if i do know it already...i tend to reread good studies cause every time i understand stuff a bit better...

[Summerrain14]

Hi, I have just been prescribed this too. Like Barnclown I have SLE (Lupus) and rheumatoid arthritis. I too have Raynards but have managed without meds for my Raynaud’s until now. My rheumatologist has advised for this to be prescribed. Have to have blood pressure taken tomorrow morning and Monday morning just to ensure it does not adversely affect my blood pressure. Fingers crossed I have no other side effects.

[redmaggie in reply to Summerrain14]

Good luck with it!

[Barnclown in reply to Summerrain14]

Will be very glad if you’ll maybe let us know how you get on with losartan...eg what dose you’re on etc... am very much hoping it helps without any probs

Am feeling very grateful to both you & redmaggie: it’s felt very strange to spend 2 years on losartan without encountering anyone else prescribed losartan for RP/EM....i’ve read in official published papers that losartan is prescribed to treat scleroderma & for blood pressure & for raynauds...but haven’t yet found mention of prescribing it for simultaneous RP/EM

Hope you enjoy the festive season 🎄❤️🍀

[redmaggie in reply to Barnclown]

Perhaps Losartan is one of the "go to" meds for this clinic (scleroderma(& EM) at the Royal Free). I also read a very similar account from someone on the living with erythromelalgia site. just search for Losartan and you will see a couple of posts. Losartan is mentioned in the survey of treatments in the research paper above. I should add it doesn't seem to help very many patients on their survey.

I'm so to hear thar you have so many medical challenges in your life, wishing you all the best. xx

[Barnclown in reply to redmaggie]

V POSS re RF & losartan!

Yes...sounds like this IS the survey i’ve read: losartan wasn’t found v effective in it

Thanks: will check out the LWE site!

& thanks re my mix: i felt worse about it before Addenbrooke’s got it convincingly diagnosed & adequately medicated + monitored...NOW i feel lucky + hopeful we can slow multisystem progression of everything to keep me safer in my old age...but, we’ll see...after all: our care IS cutting edge science: the more expert medics admit they have A LOT more to understand about immune dysfunction & connective tissue disorders. My immunology chief tells me: treating patients like you is as much an art as a science

XOXO

[Ricexxjm in reply to Barnclown]

i hVE C R E S T AND take hydoquoloquine and losartin without any problems and i am doing fine although I wish I could find more help with syndrome here in nashville tn. usa .

[Barnclown in reply to Ricexxjm]

That’s good news! Hope you find more help in 2020!

[bearman]

I have been on Losartan 25mgs for about 10 months. I do think it helps the Raynauds a bit, though my fingers and toes still get cold they don't go numb as often. Still have to keep everything warm physically. At this time of year I find preparing veg a problem, you really can't cut carrots and cabbage with gloves on. Most of my veg goes through the food processor. I ought to buy ready prepared veg but they work out expensive.

[redmaggie in reply to bearman]

glad to hear that it helps somewhat. Yes, that would be a kitchen nightmare! I work from home but find my extremities become very cold in only 20 degrees, having the heating very high makes me feel bad in other ways, never mind the bills!

[Ricexxjm in reply to bearman]

same for me with c r e s t .

[Tranhare]

I've been taking Losartin for years , 100 mgs, as a anti-hypertensive medication but then take Nifedipine10mgs times 3 a day. I don't have any problems at all with either and been on them for 5 years now

[redmaggie in reply to Tranhare]

That's good to know, I read some terrible reviews of Losartan which made me quite nervous. Postive reviews are helpful too!

[Ricexxjm in reply to redmaggie]

not losartin but olmsartin 40mg p er day and atenolol 12.5 mg per day works fine for me here in nashville , tn usa. bp is ok and i take 400 mg of hydoxychlorloquine per day.

[Becky_blue_fingers]

Hi redmaggie,

I also have Raynauds and EM. I was finally referred to Royal Free last year who were the 1st to recognise the EM which I had suspected for some time. Have suffered with both since I can remember but have had a lot of pain with it for the last 2 years.

I tried Nifedipine on the recommendation of my GP last winter but this really aggravated the EM so I had to stop.

I'm now on Losartan which helps the Raynauds a lot. I vary the dose between 25 and 50mg depending on how my EM is.

It's a constant balancing act in terms of medication and clothing to try and stay as comfortable as you can, as you'll know!

I spoke to the Royal Free a few weeks ago as I've been getting a lot of aching and pain in my feet and legs in the evenings, and pins and needles in my hands and arms had been waking me up constantly at night. They suggested I try some additional medication and so I'm now taking Amitriptyline as well. So far, this is helping my sleep and the pins and needles so fingers crossed..

[redmaggie in reply to Becky_blue_fingers]

Thanks for the reply Becky. Yes, i am forever taking off layers and puttng them on again. I'm a real cardigan girl! The pins and needles sounds random, but its good to hear the amitriptyline is helping. have a good Christmas!

[Hidden]

I take Losartan for both hypertension and secondary Raynaud’s. I’m supposed to be retrying nifedipine as well but I started and the side effects were too awful to continue. No side effects at all from Losartan but I still have Raynaud’s.

[redmaggie in reply to Hidden]

sorry to hear the nifedipine was horrible for you. I've started the 25mg losartan a few days and have not had any problems yet, too early to tell if it will help the conditions.