Pentoxyfiline

[Rubytunes]

hi

I’ve been prescribed Trental 400 mg ( pentoxyfiline) for firearm pain and hand pain associated with Raynauds. The team who prescribed it have discharged me to local rheumatologist who doesn’t want to continue prescribing as it’s a black list drug.

Since taking it I’ve only had 2 digital ulcers instead if around 10-12 at a time - the arm pain is reduced too.

Gp says can’t prescribe so now I’m at a loss as to how to keep the prescription going - I’ve asked if there is an alternative but am getting no where and I know I’m being daft but I’m finding this ongoing battle exhausting and stressful. I live alone and have no family and few local friends who can help me

any advice would be welcome as the thought of having months of ulcers and difficulties using my hand isn’t great

[creditcrunchie]

Hi Rubytunes ( love the name), I am sorry I can only offer empathy having similar but not so difficult issues over obtaining withdrawn drugs. Having had just one excruciating arterial ulcer (leg) resulting in pain relief from morphine and a blood clot removed, stents in and bingo but the thought of what you potentially may have to go through makes me angry

[Rubytunes in reply to creditcrunchie]

Thank you for your message- I’m so sorry to hear about your experiences and hope that it all goes well x

[positivedaybyday]

Hi Ruby tunes,I don't know if this suggestion helps. I have secondary raynauds due to a diagnosis of Systemic Sclerosis in 2017.

I was on Nifedipine but then the drug became difficult to source.

After talking to my Rhuematology team, who have been fantastic I was placed on Sildenfil which opens up your blood flow through your body.

I live on my own too.

You have to take control of your situation & push for alternatives. There are many out there!

Have word with your Rheumatoligy department.

They are the experts in this field. I've found my Dr out of his depth with my condition. He didn't even know what Systemic Sclerosis was in the beginning!

Please don't give up if your hands are bad. You can always ask to be referred to another hospital to get the dedicated team you need.

I've found simple hand exercises help enormously. Ask if you can have some leaflets or referral to a physiotherapy team linked to Rhuematology.

It's worth a shot! Good luck! Xx

[kimmo]

You mention your local rheumatologist won’t prescribe as it’s considered a black listed drug. The NHS has a list of medications and procedures they will not fund from public money, only in exceptional circumstances, and yours seems to be considered one of these.

Have you any contact with the team who gave you the initial prescription? If you have you could explain what you have detailed on here and stress how upsetting this is for you to face a future of pain when this drug has helped you. If not, could you write to them.

If it is on the black list perhaps no practice will be willing to prescribe as there may be a hefty cost involved, but that’s only my guess. I hope you can find a solution but there are always people on here to chat with if it all gets too much 🥰xx

[Rubytunes in reply to kimmo]

Hi thanks for your message

I’ve been backwards and forwards for nearly 8 months trying to get some sort of resolution- the meds cost appears to be£19 per month I’ve offered to purchase but apparently can’t

Very frustrating!

Take good care