Pregabalin

[SurvivorD]

I am currently coming of Pexola and been prescribed 25mg of Pregabalin to be taken before bed. I have also been prescribed 10mg Trepiline to be taken with the Pregabalin. I would like to know if the Trepiline is compatable with Pregabalin?

[SueJohnson]

It is a tricyclic anti-depressant and make RLS worse for many. A safe anti-depressant for RLS is Wellbutrin (bupropion, zyban) and trazodone. There are even some reports of Wellbutrin helping RLS symptoms and trazodone can help anxiety and insomnia.

[SurvivorD in reply to SueJohnson]

Thank you for the prompt reply. I will only take the Pregabalin.

[Joolsg]

Sigh. Another doctor who knows zero about RLS.Ask them to look at the Mayo algorithm and a website like RLS UK or rls.org.

Both set out the medications that trigger/worsen RLS and trepeline (Amitriptyline) is one of them.

25 mg pregabalin won't help much. You should wait until you're 3 weeks away from dropping last dose of Pramipexole before increasing pregabalin to 150mg.

I hope your doctor advised you to reduce Pramipexole slowly and has offered low dose opioids to settle the severe withdrawal symptoms at each dose reduction?

[SurvivorD in reply to Joolsg]

I was on 1mg of Pexola. I am currently on half . I have reduced by a quarter every two weeks. I have been on Pexola for over twenty years so my withdrawal has been an absolute nightmare. I think that is the reason he gave me the Trepiline to help with the withdrawal. I get a little relief by rubbing some cannabis cream on my legs before going to bed. I had blood tests for my iron: iron levels are normal but feratin slightly low. He said I did not need any supplements.

[Munroist in reply to SurvivorD]

It’s normally suggested that RLS sufferers should look to raise their ferritin levels to over 100µg/L at least and preferably over 200 µg/L,. The “normal” range is 25-250µg/L but RLS sufferers often benefit from higher levels. One of the easiest ways to raise your ferritin levels is iron supplements. I take Iron Bisglycinate (Gentle Iron from Holland and Barrett) which is kind to your stomach and I got my levels up to 171 from 71. It hasn’t made a huge difference although I’m reasonably sure it’s reduced the intensity of movements overnight and I get up fewer times as a result. Iron infusions are another way to raise your iron levels but in the UK are not a recognised treatment for RLS and it can be very difficult to get one in this country if your iron levels are normal.

[Joolsg in reply to SurvivorD]

1mg of Pramipexole is an extremely high dose. The FDA and UK health authority maximum is 0.5mg.To reduce safely after so many years, you should ask for 0.125mg pills and reduce by HALF a 0.125mg pill every 2 weeks. The withdrawal will be hellish, so go slowly.

As you're already at 0.5mg, see if slowing down makes the withdrawal any easier. If not, then you may want to continue a faster withdrawal. Most experts advise a very slow withdrawal over at least 6 months for high doses. Johns Hopkins Hospital are the only institution that advocates a fast withdrawal, on the basis it will be hellish anyway, so get the suffering over quickly. Be guided by how you respond to slowing down. If it makes it easier, go slower.

You will probably need a low dose opioid like codeine or oxycodone to settle the increased RLS at each dose reduction. Amitriptyline will send your RLS crazy. Avoid ALL anti depressants or sedating anti histamines.

As you're in South Africa, I don't know any doctors to recommend. This is a UK website.

A sleep specialist may be able to help you.

Serum ferritin needs to be much higher in RLS patients, preferably above 200. The Mayo Clinic Algorithm should be accepted in S. Africa, so do email a copy to your doctor. Sadly, RLS isn't taught anywhere, so doctors are unaware of the link to low brain iron, the benefits of iron infusions and the difficulties getting off Pramipexole.

Pregabalin or gabapentin are now first line meds for RLS. You should start them 4 weeks before your last dose of Pramipexole. Average doses and timings are set out in the Mayo algorithm. 1800mg gabapentin or 150mg pregabalin.

Pregabalin and gabapentin often do not help those that have experienced severe augmentation on Dopamine Agonists. If they don't help, push for an iron infusion as that helps the majority of RLS patients.

Opioids are effective for refractory RLS.

[SurvivorD in reply to Joolsg]

Thank you for your in depth reply. You so right in saying doctors know very little about RLS!! I printed a copy of the iron/ferrain levels and gave it to my doctor. He scanned it and immediately replied"iron overload can be very dangerous" and when I tried to explain the reasons I wanted to come off Pexola he began questioning me and made me feel so though I was questioning his profession. I would like to go to a Neurologist but I must get a referral letter. I will be changing my GP and hopefully can find one who understands RLS. I have read that if you go off Pexola too quickly it can cause other problems.

[SurvivorD in reply to SurvivorD]

I would really appreciate sending you my test results which I have downloaded but have no idea how to attach. Could you let me know how to send? Thank you

[Joolsg in reply to SurvivorD]

It's difficult on this site. You can try taking a photo and then uploading that. Iron overload is unlikely on the new, safer iron infusions. Many doctors are not up to date on iron. Haematologists are much better at understanding the link to low brain iron.Sadly, most doctors AND neurologists aren't taught anything about RLS. The US has the top experts, so look at their websites. Dr Andy Berkowski's is great.

relacshealth.com/

[67Waterman]

Further to what Sue says below, I take Trazadone as an anti depressant (150mg nightly) and find that it is the only one so far that does not negatively affect my RLS.

[Fingerandus]

hi SurvivorD i am still trying to get off pramipexole i am down to 0.125 after months i just cant get any lower my legs tonite are killing me and have been since 6.30pm i have taken my sifrol and 75 mg of lyrica this is my 4th night of sleeplessness my doc gave me a script upon request for 20 cocodamol and sent me for a blood test for rhuematoid artharitis good luck my dear hope things go well for you x

[SurvivorD in reply to Fingerandus]

Hi Fingerandus. My thoughts are with you........know exactly what you going through. I just wish some professor's of medicine could see and feel what we go through then maybe they might add to their curriculum!!

[SueJohnson in reply to Fingerandus]

Have you tried getting a jewelry scale so you can reduce by a lower amount?

[SueJohnson in reply to Fingerandus]

If the 20 cocodamol doesn't help you may need more. According to the Mayo Clinic Updated Algorithm on RLS, the usual effective dose if you were taking it alone is 60 to 180 mg. If needed you can print this out to show your doctor.

[Fingerandus in reply to SueJohnson]

thank you Sue I am trying ....my doc is ringing me tomorrow about results of blood test for rheumatoid arthritis i will have to see what tomorrow brings ..meanwhile the legs have started and it was only 8.30 pm i believe its a very low dose codiene and its in with paracetamol xx it would be good if some body listened ..

[SueJohnson in reply to SueJohnson]

I meant print out it from the Mayo Clinic article.

[SueJohnson]

Since you are having trouble uploading your iron results, can you just tell us what your ferritin was as that is the most important figure. Joolsg and Munroist have given you some good advice. Let me elaborate on it; if you can't get an infusion take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

On the withdrawal from Pexola wait until the symptoms from the reduction have settled before making the next reduction. It's tough, but hang in there. You can do it!

On the pregabalin when you are off the Pexola and your symptoms have settled, increase by 25 mg every 2 days until you find the dose that controls your RLS.

If you don't have the link to the Mayo Clinic Updated Algorithm on RLS here it is: Https://mayoclinicproceedings.org/a...

[SurvivorD in reply to SueJohnson]

Iron 28.9Transferring 3.8

%Saturation 30

Ferritin 30

I will definitely be purchasing the Iron tablets you have suggested. To confirm take one every night or every other day? With Orange juice or Vitamin C. Thank you for your time!!

[SueJohnson in reply to SurvivorD]

With your ferritin so low, I would suggest every day.

[SurvivorD in reply to SueJohnson]

Thank you 🤗🤗🤗

[Avocadopal]

I would not recommend Pregabalin to anyone! I have been taking pregabalin for two years now and yes it helped my restless legs initially but I had to keep increasing the dose every month or so to be effective.

In the end I was taking 4 x 25g and this led to horrendous tinnitus that was so loud it sounded as if I was on runway watching a plane land. This lasted for two hours. I got so fed up with all the side effects , gaining weight, lack of concentration , balance problems, bladder problems and most importantly lack of sleep, that I has weaned myself off pregabalin.

I am now taking two Tramadol tabs at 2pm every day and I am totally a new person. Have lost 4lbs, I sleep well (even in this heat), my brain is not fogged up, my bladder is back to normal and I'm walking better.

I'm so annoyed that a neurologist can prescribe these awful drugs without any thought of what the consequences might be.

So please if you get any of these symptoms come off pregabalin. It gave me two years of hell.

Yes Tramadol can make me sleepy but that takes effect about nine hours later, so I take them at 2pm and I'm ready for bed by 10ish.

Warning: do not the Tramadol if you intend driving.

I hope this helps someone.