Sifrol hell

Hi,

I am a 57yo lady. Maybe mid 2018 I was prescribed Sifrol aka Pramipexole, Mirapex etc to combat RSL whilst withdrawing from Slow Release Tramadol used for about 16 years for Fibromyalgia.

I had NO idea at the time this drug SIFROL is harder to get off than opiates...unless you use opiate meds to reduce symptoms thus back to square 1.

Coming off the Tramadol the RSL I thought was getting worse from drug withdrawal and I was upping the Sifrol dose to it's maximum dose and it was a absolute nightmare...I didn't know until Jan, Feb this year Sifrol was augmenting the RSL and by the end of 2018 I was in adrenal exhaustion because of augmentation from Sifrol...(I have studied Nutritional Medicine as well as long time Registered Nurse). And LOL I've even worked in a Rapid Heroin Detox Unit a long time ago and I never dreamed this would be in my future back then. I live in Australia.

I had to guide my Dr on how to get off Tramadol and when RSL kicked in with the withdrawal unfortunately I trusted my Dr with a prescrition for Sifrol as I had been on and got off a drug for that some years ago BUT then I was still taking Tramadol which is used for Sifrol withdrawal. So only in retrospect I had no idea dopamine agonists can mess you up so much with augmentation and addiction cycle.

It took a few months to get back to the starting dose of .18 pramipexole equivalent. Then Dr suggests shaving pills to reduce further and that's rediculous because DRUG to EXCIPIANT ratio is not a predictable dose.

After remembering about Compounding Pharmacists who can make tablets into smaller doses of capsules or liquids, it has taken me 5 months to get to 4/5 of the standard lowest dose tablet...2 weeks now on 3/5 BUT I've had to take Codiene most of this year up to about 80mg per night to supposedly get through each dose drop. It's taken over 7 months and I still have symptoms most nights regardless.

This week I've tried to reduce Codiene because it's having adverse affects on my health and I know it's a bandaid and I decided to just suck it up and see what the current Sifrol dose is doing to me.

BUT... 2nd night with no Codiene and even though daily I'm no where near the codiene max of 240mg a day... I've got withdrawal from that going on last night and today and HAD to take codiene to ease that horrific rod of pain in the bones in the legs feeling to get a bit of sleep.

So...today I remembered about NALTREXONE and I would like to know if ANYONE has had success using ONLY naltrexone to get off Sifrol with no replacement Dopamine agonists or synthetic opiates, or anti-seizure meds to help the process, nor taking antidepressants all of which work in these same neurological pathways.

I am like many out there imprisoned my this drug. I can't tell what is withdrawal from it or what is augmentation from it and it seems I'm very sensitive to augmentation of RSL symptoms increasing in very short periods of time, weeks to a month.

Thank you in advance for reading my long post and please make note of your Naltrexone starting dose if that's ok and when and if you have been able to stop taking that too and are drug free. 😻

[Joolsg]

I feel for you. It’s been a vicious cycle for you.

I don’t know anyone who has used LDN to get off DAs but I do know of 2 people on here who used it to get off opioid meds and are now both using 4.5mg a day for their RLS.

The one I contacted has left this forum because the LDN completely controls her RLS.

I’d love to think it helps DA withdrawal as well but I haven’t heard of anyone using it for that purpose yet.

[Hidden in reply to Joolsg]

Joolsg,

Thank you so much for taking the time to reply.

Based on the pharmacology physiology of how LDN works, it tricks the body into thinking it is an opiate by binding to the opiate receptors in the brain...so therefore given opiates work for RLS it makes sense to me it works for RLS obviously to some degree depending on age, health etc.

I know for sure my Dr won't and cannot prescribe it in Australia, I think only Drs working out of Drug and Alcohol Centres can prescribe it. But I don't know if I can get LDN in my state Western Australia but I do know the much higher standard dose can be prescribed.

I did remember last night Clonidine helps with drug withdrawal RSL and I happened to have 8 tabs left from last year. That helped considerably last night. Its a blood pressure medication and needs to be used with consideration of that when one gets up in the night.

I will continue to document what's helped ongoing for others that may read this. The Clonidine MIGHT get me through this, we shall see.

I don't drink, smoke or use illegal drugs and my diet is simple and nutritionally balanced.

Again thank you for your response. All the best for now 🦋

[Joolsg in reply to Hidden]

Also check your bloods. raising serum ferritin above 100 can help the augmenation symptoms & the DA withdrawal slightly. It'such a shame you were given DAs for the opioid induced RLS. Clonidine would have been much better to get you off the tramadol. I really hope you can get off all the drugs because it would appear you could be RLS free once through all the withdrawals. Could you not visit a drug and alcohol centre -because you are in a similar position and need the same level of help. Also, what will you take for the fibromyalgia once off all the DAs. Will you continue with codeine?

[Hidden in reply to Joolsg]

Recent bloods, all good. Yes if the Clonidine doesn't help enough I will go to a Drug and Alcohol Centre. GP will prescribe Clonidine.

Thanks again

[Hidden in reply to Joolsg]

My local Dr refuses to look at LDN as an option. I have an appointment at a Drug and Alcohol Centre on Monday.

Thankfully those places actually understand what a nightmare withdrawal issues are and I might actually get some help.

I might add local Dr been giving my Diazepam, Nitrazepam as well for 2 years to help with sleep. Those 2 plus Codiene...sigh

I'm sure Monday will be productive in some way. 🦋

[Legsbohn]

I’ve had RLS for 25+ years. I live in Florida and was first prescribed Tramadol about 15 years ago. I started with 100 mg and it helped a lot but didn’t make the problem go away. I asked my GP to up the dosage but he didn’t feel comfortable doing it because of all the rules Florida has put on doctors in prescribing opiates. He told me to go to a pain doctor. I went to a pain clinic and after a lot of test to determine if I had arthritis, etc they agreed to up my dosage on the Tramadol. I’ve been taking 300mg for several years now and it’s the first time in a long time that I don’t spend 1/2 the night walking around in order to get to sleep. I’ve tried many different ways to take Tramadol but what works best for me is 100mg around 1pm, another 100mg around 5pm and the last 100mg around 8pm. It’s a slow acting drug and my doctor and I feel that the regime that I’m on slowly builds up the right amount for me. I usually go to bed around 11pm and sleep until morning. I’m 75 and am not planning on ever stop taking Tramadol as it works. I have to go back to the doctor every three months to see how it’s doing in my system but so far so good. My mother also had RLS and I just wish she would have found out about Tramadol as it would have saved her years of unnecessary pain. I know it works because if I skip a dose (bad memory) I end up walking the floors before I can get to sleep. I know everyone is different but Tramadol works for me. You just have to find the right dosage for you.

[Hidden in reply to Legsbohn]

Thank you for sharing your story and taking the time to read mine. I'm very happy Tramadol is helping you with your situation

[Hidden]

Thanks for your reply. GP won't prescribe but I know D and A Centre will give script which hopefully I can ask him to write it for Compounding.

Compounded Sifrol is the same $60 for the each script and I get 150 caps, as that's the lowest dose he can get it down to as it's not stable in solution.

All the best

[Hidden]

Just a question, do you use LDN for rest less leg issues? Thanks. I've since discussed LDN with my Compounding Pharmacist and my Pharmacist friend I've known since 2005. They both agree it's probably the best option for me to manage both issues...and said the GP can legally prescribe it, then the compounding pharmacist can create the LDN amount. Lets hope he does when I see him tomorrow. Thanks again for your input

[Hidden]

GP refused to prescribe LDN yesterday. Have appointment at D and A Centre on Monday.

Thankfully those places actually understand what a nightmare withdrawal issues are and I might actually get some help.

[blackcat2 in reply to Hidden]

I'm in Australia and have just started LDN to try to address RLS. You need to see an integrative doctor (sometimes referred to as functional medicine doctors) for an LDN script, and nothing will be written anywhere about you having drug addiction issues. LDN is prescribed primarily for inflammation. These doctors are different to GPs (well they are actually GPs but with additional training). They listen to you. They cost a few hundred dollars for the initial consult (some covered by medicare) but are so worth it. You need to look up local compounding pharmacies and phone them and ask which doctors in your area are prescribing LDN.

I don't yet know if it helps with RLS, time will tell, but it is certainly known to be very effective for chronic pain associated with fibromyalgia. Integrative doctors are extremely helpful with the kinds of complex issues you are experiencing Hidden.

[Rose-AC]

Hi hidden, I really need your help after reading your letter of two years ago.I have been on tramadol for RLS for 18 years. I am 68 years old. Also many other drugs for fibromyalgia after a hysterectomy. I have weaned myself off fibromyalgia drugs over the past month or so, but am having trouble getting off the tramadol. Doctor has me on tramadol and sifrol reducing the amount of tramadol from 200 mg to 150mg slow release. No R L at the moment, no wonder! but the withdrawals are horrendous, maybe combining the two are making it worse. I feel like walking in front of a bus,have had enough! Occasionally I leave out the 50mg tramadol,still feel the same. Hope you can understand my garbled explanation,would love to know how you got on and what you think. I have read that it should only take a week or two to feel better, I still feel the same if not worse. Maybe I shouldn’t be mixing them, I do feel confident in my doctor though? Sometimes it helps to talk with someone who has gone through the same thing.Sifrol is0.25mg 2 at night. Hope you are still looking at this page. I might add the tramadol after all these years stopped me sleeping!!!!

[Madlegs1 in reply to Rose-AC]

When a poster is "hidden" it usually means that they have left the site as a member.They may occasionally check in ,but also may not.

Good luck.