Help with a decision please

[bedith6]

Hello everyone. I have posted not too long ago so I suppose this could be called a follow up. I said in my last post my g.p. refused iron infusion Temgesic and Oxycodone and didn’t seem specially interested and certainly knew nothing re. RL S I have sent her a very graphic letter on all that I go through and printed a lot of science for her to read. She now seems more sympathetic and has referred me to not one but two clinics, a pain and a sleep clinic. Of course the waiting lists are long and so in the meantime she has prescribed Pregabalin as well as the Tramadol I am already taking.(which has lost its efficacy) My query is do I begin to take the Pregabalin..? I am thinking if I do see either consultant soon and I hope they will prescribe an opiate because having had Tramadol for four years I think this is the way to go for me, is Pregabalin just another medication I have to withdraw from?I feel it might be best to wait however difficult and start whatever medication either consultant may advise. I’m not at all sure Pregabalin will work for me anyway as Gabapentin didn’t, yes I know they are slightly different but over the years I have tried everything going and only the Tramadol has ever helped. Please let me know what you think as I need some knowledgeable and informed people to help me with the decision Thank you in advance.

[Joolsg]

Tough one. Many people report pregabalin works well for them but it didn't make any difference to my RLS and eventually caused augmentation in my left arm and shoulder after 3 years. I reduced so slowly that I didn't get any withdrawal. You really are between a rock and a hard place and I understand your reluctance to try pregabalin before you get the chance to see if Temgesic works. Gabapentin not only didn't work, the side effects were awful.Dr B is of the opinion that the Alpha2Delta ligands don't work on those who augmented badly on Dopamine Agonists. As he treats thousands of RLS patients, he's more knowledgeable than most neurologists and I think he's correct.

I will be having same conversation witn a GP ( never seen the same GP twice) on Tuesday and I am pretty sure he/she will refuse Temgesic.

[Amrob in reply to Joolsg]

Contrary to what Dr B says, I augmented on pramipexole (to the point it affected my arms also) and subsequently took pregabalin which works very well in controlling my symptoms.

[Amrob]

Personally I don't find withdrawing from pregabalin all that problematic providing i do it slowly and supplement with something like clonazepam. If you are taking it short term and at a relatively low dose, withdrawal may not be much of an issue. If you need something in the short term and you don't have many options, you could try it and see if it works?

[bedith6 in reply to Amrob]

Thanks for your reply

[intermk in reply to Amrob]

I didn't have any problem stopping pregabalin and was on it for over 2 years.

[bedith6 in reply to intermk]

Thanks for your reply did it cause weight gain?

[intermk in reply to bedith6]

No not at all. But I'm usually very active so it would be difficult for me to gain weight due to a side effect.

[Oregonmike]

Have you considered Kratom? No more than a quarter of an ounce / 3x daily?I use it for those times when I just can’t stop the big muscles to calm

Works for me

Pregab has a history of making it worse ( imho)

[bedith6 in reply to Oregonmike]

Thanks for reply. I have heard of Kratom but am very wary of it as I know nothing about it.ie where to buy it, what sort to buy or how to take it, also what side effects there might be and do you have awful withdrawal symptoms when coming off it?.

[intermk in reply to bedith6]

Kratom worked very well for me. I only stopped it because I needed so much that I just couldn't get it all down. I was up to 52 mg per night. I took it only for pain so coming off it was bothersome for about 36 hours only. So don't be concerned much about withdrawal but still, do it slowly.

[jaysull]

Hmm - difficult, the side effects of pregabalin are pretty ominous and need to be weighed against any other meds you might be taking. Taking more opiates not a good plan either. Maybe a couple of glasses of red wine in the evening might help?

[wildlegs]

I know everyone is different and just because something works for me it may not work for others but I’ll tell you my opinion anyway. I’ve been taking Tramodol for ten years now. I started with 100 mg and then 200 mg seemed like the magic number. Worked great for 4 years and then we moved from Florida to Wisconsin. I went to a pain doctor and she never heard of RLS - not a good start. After much talking and trying a couple other drugs she finally agreed to give me a prescription for Tramodol but would only give me 150 mg which was better then the other things she put me on. I’ve been on a 150 mg doss for six months now and it’s 80% effective. The two months I didn’t have Tramodol was rough so I’m glad she agreed to give me what I’m now taking - even though 200 mg would be better. Good luck because to the best of my knowledge there is no cure and it’s just something we will be fighting until they find something.

[ziggypiggy]

Way to give your GP the business! Who knows how many of her current and future patients will benefit it.