Not posted for a while

[HipHop1972]

since coming off Ropinirole in October 2023 a lot has happened. I saw Doctor Jose Thomas at the Spire hospital in Cardiff South Wales before Christmas and completed his standard forms relating to RLS, sleep patterns mental state and so on. He wrote to my GP suggesting i commence a course of Pregabalin. I sent my Blood test for iron to Doctor Thomas and he confirmed that it was in a good state. Unfortunately he then went on holiday for several weeks so couldn’t contact him until beginning of Jan 2024, and in the interim period I was taking 250mg Pregabalin and my lower limbs had swollen and I was suffering blurred vision when reading. Visited my GP had blood tests which showed a downturn in Renal function so was taken off Lisinopril and Furosemide and booked in for a scan on my Kidneys and an ECG on my Heart. I have an appointment to see my GP next week for Results.

In the meantime I’ve had a further conversation With Doctor Thomas and undertaken tests for sleep Apnea which has tested positive. Doctor Thomas who is an international expert on sleep disorders and specialist in RLS is convinced that if Sleep Apnea is controlled then RLS is less troublesome and easier to medicate. I have a follow up with him nest week also.

Things I’ve noticed and passed on to Doctor Thomas are that I started to reduce my Pregabalin and now take only 50mg before bed. My vision is improving and one leg at least is less swollen and my Renal function is improving. The other thing that I find extraordinary is that since getting off Ropinirole my RLS has over a period of time become less problematic. For instance and bearing in mind I’m taking only 50 mg Progabalin at night I don’t suffer from any RLS during the day and into the late evening which is fantastic as it was usually 24/7. It does wake me up about 3 hours after going to bed but it only takes me about 10 mins or less to fall asleep. I have to get up in the night with RLS for a couple of hours. And RLS does wake me in the morning around 7am but once up and dressed its gone for the day.

I intend to stop taking Pregabalin and will be free early next week. I really don’t know what’s happened to produce this outcome and hope that if Doctor Thomas can treat my Sleep Apnea then I’ll be free from the few remaining RLS treatments and their side effects.

In the very dark days and you all will know what they are like, I was told that there is light at the end of the tunnel and I didn’t believe it and said it was just a joker walking towards me with a lantern. Well I was wrong and have been for over 40 years, so my friends there is always hope. You just have to believe in it, fight like the very devil with the medical profession when you know they are pointing you in the wrong direction and keep supporting each other, never become complacent just because you are feeling better.

With my very best wishes to all my RLS friends HipHop1972 🤗

[ChrisColumbus]

Some very positive news, long may it continue!As an over 65 year old patient hopefully your doctor started you on 50mg of pregabalin and only moved you to a higher dose gradually every few days to find the effective dose: were you moved up to 250mg too quickly do you think?

[HipHop1972 in reply to ChrisColumbus]

Hi Chris, yes you may be right but let’s see how things go without Pregabalin, I will follow my Specialists advice when we next speak.

Regards

[Jumpey]

Great news.

[DicCarlson]

Run down your iron blood tests - it could be a key player! Get actual numbers not that it's OK.

[HipHop1972 in reply to DicCarlson]

Thanks For reply, I do have access to all my actual test results and they are the ones i pass to Doctor Jose Thomas so they are accurately assessed.

Regards

[ChrisColumbus in reply to DicCarlson]

And just for reassurance Dic, Dr Thomas is one of the comparatively few UK doctors that Joolsg trusts on RLS treatment

[HipHop1972 in reply to ChrisColumbus]

Thanks Chris, it was Joolsg who put me in touch with him. I’ve got a lot to thank Joolsg for she is a treasure on this site and RLS-UK

[Joolsg]

Brilliant news. I often wonder if we had all been treated with iron infusions/ cpap machines initially, whether we could have avoided years of suffering.Sleeping sleep apnoea and increasing oxygen most definitely helps many people.

Onwards and upwards.

[HipHop1972 in reply to Joolsg]

Thank you Joolsg, you are my angel who pointed me in the right direction. Your definitely on my Christmas Card list 🤣🤗

[Joolsg in reply to HipHop1972]

Aww, thank you.

Pippins was my guardian angel in 2016. All we can do is keep trying to educate doctors and pass on the info to the thousands of other poor souls out there with severe RLS caused by ropinirole/pramipexole and whose doctors just shrug and say it's the disease getting worse. No, no and no. It's the horrible drugs you poisoned us with.

One day, one day.....

Sleep well.

[Sappington]

I, like so many others, live in the trapped environment of Pramipexole and Gabapentin, with dreadful sleep patterns and the constant feeling of the RLS being about to spring into action, as it sometimes does after taking the medication. My neurologist has now provided me with a referral for a Ferritin infusion. Apparently my level was on the low side of normal. Can anyone who has been given ferritin can you tell me how quickly it's effects can be felt (the lack of the RLS sensation) if it is going to work. If it does do the job do I reduce my medication, kep it at the same level or wean mysewlf off it. I am trying to find out the options and possibilities from those who have had the experience. Thanks