Update on withdrawal from Roprinirole

[cicek]

I finally had a phone conversation with my GP yesterday. Explained to him I was suffering augmentation due to Roprinirole. He listened and said what about Pramipexole. After explaining to him that was the same thing I asked if he could give me Pregabalin so that I could start taking it during the last four weeks of my withdrawal as although it would not help with that, it should be in my system and begin helping once all the DA had gone from my system. He agreed and said he would phone me in 6 weeks. Never asked about my symptoms, how I was feeling or coping or anything else for that matter. No more or less than I expected really. My last Ferritin test was 90 but the one before that was 200 so going to get it tested again. Took nearly 3 weeks to get this appointment so if I need him again if I am struggling I will say it's urgent!! Onwards and upwards

[Elffindoe]

As you say, onwards and upwards.

[Joolsg]

That sounds like a standard UK GP response. You cab safely take ferrous bisglycinate every night while withdrawing and it may help a little. Keep going slowly.If it becomes difficult do call back and ask for tramadol or oxycodone to help short term with withdrawal. And cannabis. It really, really helped me.

Stay strong, you're getting there and the intensity of the RLS will be reduced aboit 2 to 3 weeks after last dose.

[cicek in reply to Joolsg]

Thank you so much for your words of reassurance. Without the help on here life would be so very different. I will do it as I am very determined. I reduce to .50mg next week (I think I have done an extra week at .75mg) so getting closer. I already 2 x 50m Tramadol twice daily. I take two around 6.00 p.m. and the next two around 11.00 p.m. I think this is helping me during the night. As I have a condition called Polycythemia the GP did say he would not like to recommend any iron until he had spoken to my Haematologist. I do have blood tests every two months for this and occasionally they have to remove a pint of blood to "thin me down". Despite that as you saw in my post, my last Ferritin reading was 90. Do you have any idea if Cannabis can be taken with heart medications? I take Bisoprolol and Digoxin for persistent AF and don't want to cause any problems there. I would certainly be happy to give it a try if necessary. Again, thanks for all you help.

[Joolsg in reply to cicek]

That's a tough one. I think opioids are more risky with heart issues as they can cause rapid heartbeats. I am not sure whether cannabis would affect your AF but will look it up. I suspect lack of sleep from withdrawal would be worse though. I'll do some research.

[Joolsg in reply to cicek]

webmd.com/heart-disease/atr...

There is evidence that cannabis can affect AF by reducing blood pressure so read this article and discuss with your Doctor. Your blood pressure will increase during withdrawal because of the lack of sleep, anxiety and the constant jerking so the cannabis may counter these.

Pros and cons.

Tramadol does increase the risk of AF and you're already taking that so...... I think it will be a case of having the cannabis available just in case.

You may find it relaxes and calms you and therefore counteracts fast heartbeat, high blood pressure, stress and allows you to sleep.

[cicek in reply to Joolsg]

Thank you again so much for that. A very interesting article. Needless to say I do still feel afraid of the cannabis but sometimes I'm sure needs must. I am already taking BP meds and I still run on the high side. Amazingly no-one at Cardiology has ever mentioned the Tramadol. Neither has my GP but I'm not really surprised at that. One thing's for sure, if I struggle any more I will be banging on his door this time rather than waiting 3 weeks to speak to him 😀😀

[serengazer in reply to cicek]

Hi there. Have you ever tried taking a quality capsule of garlic oil. It has turned my families HBP around and lowered it quickly! It can’t hurt and also wards off colds😃

Have been using weed for 6 years (am 62) and it has been a lifesaver. Don’t fear it!

All the best. Teresa

[restlesslady in reply to cicek]

Hi Cicek I am also withdrawing from a Dopamine Agonist-for the second time in my case .About 11 years ago from Pramipexole now from Neupro patch I am down to half a patch ow but really struggling. I am on Zomorph and Pregablin. Good luck we will keep in touch x

[cicek in reply to restlesslady]

Morning. I hope you had a good night. You are very strong to be doing this for a second time. Well done you!! Are you in the UK and if so does your GP give you the Zomorph? How long have you been on the Pregabalin? I will be starting that probably next week but am a little bothered about the side effects. Stay strong and we will keep in touch x

[restlesslady in reply to cicek]

Hi yes in the UK, I get Zomorph fir pain but it isn't helping y rls unfortunately. I take 75mg Pregablin morning and night been on it for years .Nothing helping just now going to see if I can get a change of opiate .x

[cicek in reply to restlesslady]

So sorry to hear that. I hope you get something suitable from you GP. I am about to start Pregabalin but it's always a little worrying taking something new. Good luck x

[restlesslady in reply to cicek]

The only side effect I got to Pregablin was weight gain .Hope it works for you ! X

[cicek in reply to restlesslady]

That's the one I'm bothered about!!! Just managed to lose a little Covid weight. The Ropinirole has always made me search for food during the night too. I'll just have to learn to curb my appetite 🤔. Thank you. did you have no swollen ankles etc?

[Elffindoe in reply to cicek]

Do take your doc's advice.

If you have polycythaemia it means you have too many blood cells.

I'm not sure this means you have too much iron.

What's toxic about iron is if there is too much "free" or unbound iron.

Most iron in the body is bound i.e. used in haemoglobin, stored as ferritin or in the process of being transported by transferrin. This is safe.

Free iron can get deposited in joints and organs including the brain. Imagine having literally lumps of iron in a joint. This is iron overload.

It's important the to look at serum iron levels not getting too high. It's also important transferrin saturation (TSAT)is not above 45%. Imagine transferrin as being a bucket. If it's 30% full this means it's able to take in more iron. The fuller it gets (TSAT higher), the less able it is to handle more iron.

Logically it would seem that the more cells you have, the higher your haemoglobin might be.

However, it doesn't mean that serum iron or TSAT will be too high and you can't therefore have oral iron.

With a ferritin level of 90, this will lower how much iron you can absorb anyway.

However, as I say do discuss it with your doc.

I hope this helps, sometimes what I write is clear as mud.

[cicek in reply to Elffindoe]

Thank you. I'll have to read this a couple of times I think. It's a very detailed explanation as you do usually give and it is always welcome.