I need some medication advice ( suggestions )

[PBMB]

Hi ,

So I recently posted about sidenafil - I have been taking this for a couple of months with no effect on my Raynaud’s

My gp has upped my dosage to 3x a day . I haven’t experienced any really adverse side effects so I’m hoping it will help however I’m not holding my breath !

Unfortunately we are now at a bit of a loss as to where to go next and my attacks are very frequent .

I have tried other medications but just would like to hear of your experiences of how well the meds worked and whether side effects are tolerable .

I’m Looking at trying the slow release nifidepeine next ( as the other was awful for side effects ) but hoping someone can suggest something else .

Many thanks in advance 🤞

[Alisonmac65]

hiya , sorry to hear your struggling , I take sidenifil and nifidepeine and it works great but i only take sidenifil in the winter , hope you soon get the balance right for you , I no how hard it is , my toes had frostbite and went black on the ends so I was desperate to get it right, have you seen a rheumatologist yet if not ask your gp to refer you x

[PBMB in reply to Alisonmac65]

Hi ,

Thanks for your response . Yes the rheumatologist suggested sidenafil and I was hopeful it would work . Sounds like it has for you 😊

Do you take sidenafil instead of nifidepeine in the winter or as well as ?

It’s a case of trial and error isn’t it .

[Alisonmac65 in reply to PBMB]

No I take both , I have severe Raynauds x

[Prettyfalcon]

Hello,

Has your GP or rheumatologist discussed iloprost infusions with you?

My journey with Raynauds treatment was very similar to yours but the 6 monthly infusions have been a game changer. Yes, of course I still get blue hands and attacks but they come and go really quickly. My fingers aren’t as sore and I don’t get ulcers either.

It’s not ideal having 6 hours a day in hospital for 5 days but it is so worth it.

Good luck and I hope you find a treatment that helps

[PBMB in reply to Prettyfalcon]

Hi ,

Thank you so much for your response .

My rheumatologist suggested fluoxetine ( which didn’t work ) and sidenafil ( which hasn’t worked so far )

I am currently been monitored by my gp . However she has said we may have to go back to rheumatology for other options .

I feel like the infusion could be an option but will be hard to sort out time wise !

Are the effects immediate and how long do they last for you ?

Thanks 🙏

[Prettyfalcon in reply to PBMB]

Hey,

I tried fluoxetine (awful) losartan (ineffective) and nifedipine (ineffective) and I have sildenafil too, which I find pretty effective in the milder spring months. It doesn’t keep the ulcers at bay though.

I’m going in for my winter top up of iloprost next week. It’ll the the fourth one I have had and I definitely notice it working faster now. They say it can take a few weeks to feel the benefit but I’d say by the end of the week of treatment, my fingers are definitely looking less dead and dare I say it, pink and healthy! As I said, it doesn’t stop the attacks but they are short lived and not really painful anymore.

I take my laptop and work from the ward so although inconvenient, it doesn’t interfere with work too much. I’m usually given a few weeks notice to plan it too.

I’ve had Raynauds since I was 17 (now 42) and I really rate it as a treatment. It’s definitely worth considering.

good luck!

[Midgebite21]

Hi,

Sorry to hear you’re struggling. Unfortunately I’ve found that the meds don’t stop the attacks but do help with the severity and the longevity of them. The medication is only one part of the fight and should be used alongside other preventative measures like keeping core temperature up by wearing layers, avoiding drafts and cold winds, fingerless gloves, wrist warmers, thermal gloves, hand warmers, merino wool socks and shearling lined boots, hats, scarves, balaclava’s if it’s really bad weather etc. I have thermal water repellent trousers for walking the dog and the best quality outdoor coat I can afford. I live in Scotland and the wind chill is one of my biggest triggers so it’s a constant battle (even in August 🫣😆).

Hope you manage to find a balance that suits you best soon.

I’m 52, have had Raynauds since my early teens and scleroderma since age 30. It does just become part of life I’m afraid. I’m basically living life in a way that mitigates the risk of very bad attacks that can lead to digital ulcers and chilblains (which are both horrendous). Take care.

[OldTed60]

It’s worth noting that none of these Raynauds treatments prevent attacks or limit frequency. However they are designed to minimise the resulting damage to the extremities eg ulcers and severe chilblains. I have iloprost for a day a month as well as losartan 100mg because I couldn’t tolerate the others. However in my area you have to have Raynauds secondary to Systemic Sclerosis now to qualify for this. I know this isn’t the case in other areas of UK though so it’s worth asking a rheumatologist at least

[CarerEdi]

My mum has severe secondary Raynaud's but also a heart problem. The Nifedipress didn't work - in fact she got swollen legs with it and had to come off it in weeks. The GPs had no idea of how severe Raynaud's can get, I think as so many people get it mildly and it being less apparent in dark skin, it took a very bad attack for her to get the right help. This was from the Rheumatologist who immediately put her on yearly winter iloprost (every Oct). It has been a game changer - so has the Rheumatologist agreeing the best medicines for her heart as some can make the Raynaud's worse. In the end Angitil SR was prescribed which has helped her Raynaud's as well as her heart, but took a few months to work. I think it would be really great for you to try the iloprost though, even if its just every winter before the cold sets in.

[CarerEdi]

In our area, iloprost can only be authorised by the Rheumatologist at the main hospital.