Uphill battle

[RLSLADY]

On pramepexole for years, got up to 3 a night, argumentation! Didn't know what was happening untill I was sign posted here.

Understanding GP prescribed pregabalin @75mg, taken untill side effects wore off, rang surgery and accepted a call instead of a face to face.

Lovely lady GP from a trust ? Not my surgery,called ,knew exactly what I was talking about, upped my dose to 150mg and said she'd ask my surgery to put on repeat.

When ordering my usual meds, no pregabalin listed so left a message along with prescription order.

Long story short,after another message request ignored i got told pregabalin cannot go on repeat?

I have to ring every time I need a new prescription.

OK. I do, they send 14 @75mg and say its for 14 days.

That was unbeknown to me untill I picked them up.

That's another by the by problem as I have for years got med,s delivered.

Prescription was sent 20th Dec.

They weren't delivered!

By the time I knew they weren't coming, the pharmacy was shut until 28th, by that time, I'd missed 3 doses.

I'd ordered by phone my next lot, rang pharmacy, not there, rang surgery, gp refused ?? Presumably thinking iv enough for 14 days why want another 14 days so soon ?

Upshot.. I'm now left with one more 150mg dose.

Can't have a meds review for 2 weeks, reception suggested I ring 111, I did they sent a request to my pharmacy , who can't prescribed as class C ?

Now iv to call my gp at 8.am to try get an appointment

This is just a farce. So utterly frustrating

What on earth do I do should I not be able to get an appointment tomorrow.

I'm betting I can't , never managed it yet.

This just feels like it's going to be an ongoing problem.

Iv managed to get down to 1 pramepexole sometimes 1and a half as well but will be going backwards at this rate.

Almost reduced to tears today after all these calls and getting no where.

[SueJohnson]

Unbelievable !!!

Is the pregabalin actually helping you? Until you are completely off pramipexole for several weeks it is not going to make much of a difference.

To help you with your withdrawal you can get kratom. Although it is illegal in the UK, you can get it from kratom.co.uk. They deliver in 48 hours.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute although that won't help you right now.

[RLSLADY in reply to SueJohnson]

Hi SuejonsonIv been reading on here for quite sometime now followed a lot of your advice.

I had bloods, ferritin was low for rls, so taking ferrous sulphate, need bloods again if I can.

looked at all potential triggers,even bought therapulse didn't help me unfortunately, being passed on to my brother who also suffers.

Its hereditary my farther was terrible with rls, younger brother has started with it as has my Son weirdly my elder sister hasn't got it.

It seemed very likely the pregabalin was helping me reduce pramepexole I couldn't have reduced to 1 from 3 before taking pregabalin unless its psychological ?

I'll look at kratom too thank you.

[SueJohnson in reply to RLSLADY]

Since you have been reading a lot of the posts you probably know this but just in case you missed it. Take your 325 mg ferrous sulfate which contains 65 mg of elemental iron, with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, 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. Or you can take it every day, but be sure it is 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours 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 to slowly raise your ferritin. Ask for a new blood test after 3 months.

[RLSLADY in reply to SueJohnson]

Thank you much appreciated

[SueJohnson in reply to RLSLADY]

If you ever decide you want to come off the pramipexole, reply back here and I can give you some advice.

[RLSLADY in reply to SueJohnson]

Hi SueI want to, trying half tonight as I felt so sleepy after the pregabalin today,plus no sleep last night, willed myself to stay awake today, so I don't think a bomb would wake me tonight after my the next dose (taking now)

[RLSLADY in reply to RLSLADY]

Hi an update. Bloods now back ferritin 58 as the attached.

Iv now to convince the next GP that I see, as iv yet to see the same one twice.

That it's low for RLS.

Hopefully I'll get a GP that's in the know. Requested full medical records.

Looking at the limited records I have.

Its possibly 10 years since my ferritin was checked, I think that test was requested when I was first prescribed pramipexole? It was low for rls then.

I'll be more accurate with dates when I get my records.

I did ask for a full iron panel. Only got what I attached in reference to iron.

On a brighter note im up to 300mg of pregabalin and going great, no horrible side effects now they've subsided leaving me just a little unsteady.

I'm getting breakthrough legs 2 out of 7 nights waking me then,i have to pace/move untill it wears off, usually as its coming daylight.

So going to ask GP for the last higher dose increase of pregabalin.

Then hopefully that's me sorted.

A vast improvement from when I started weaning off pramepexole and on to pregabalin. Been a long road but worth it.

Thank you all for the help encouraging posts and some cyber hand holding when i most need it.

Any input gratefully received on what to aim for re ferritin,ask for on next bloods, and what's best to help increase ferritin

Many many thanks

Serum Ferritin result

[RLSLADY in reply to SueJohnson]

Looked at kratom it's expensive I'm only on disability benefits, no pension till I hit 66 in sep unfortunately. How much kratom would be needed.Thank you Sue

[SueJohnson in reply to RLSLADY]

The recommended starting dose is 2.4 grams.

[Madlegs1]

Can you go to an emergency department at a hospital.?

It is absolutely crazy, what you have been put through!

[RLSLADY in reply to Madlegs1]

Thank youIv no addictions or drug abuse in my past so I don't know why it can't go on repeat?

Or why a GP firstly reduced the dose from 150mg to 75mg after id had a month's tablets, then refused to sign off a second prescription but I'm going to ask, should i get an appointment.

I could go to our urgent care and will if I get no further tomorrow after trying to get in at my GP,S.

[ChrisColumbus]

Firstly, I regret that I'm unable to offer useful help here - only offer condolences. Good luck tomorrow.

While this doesnt help, I just thought that I'd check the Home Office rules for gabapentin and pregabalin. The following interpretation was written by the MS Trust in 2019, effective 1/4/19:

"Doctors will only be able to provide up to 30 days’ supply of gabapentin or pregabalin on one prescription.

You will need to request a repeat prescription each month from your GP practice.

Your GP practice may no longer be able to send your prescription electronically to the pharmacy. This means that you or your representative will need to visit the GP practice each month to collect your prescription and take it to the pharmacy.

If your GP practice uses the electronic prescription service for controlled drugs, your prescription will be sent to the pharmacy electronically. This system has not yet been rolled out in all GP practices so it may be useful to contact your GP practice and check whether they have this system in place.

You, or your representative, must collect your medicine from the pharmacy within 28 days of the date on the prescription.

You, or your representative, will need to sign and show proof of your identity when you collect your medicine from the pharmacy."

[RLSLADY in reply to ChrisColumbus]

Thank youAt least the prescription has been being sent electronically. Also been reading looks like I can't go to urgent care tomorrow if I don't get in or a phone call off a GP tomorrow, snookered at every turn

Gov Web site

[Joolsg]

I can request pregabalin each month online and the prescription goes electronically to my pharmacy. But I can only get a month at a time, so I order at least a weeks before. Can you send an email to explain that you're going through a brutal withdrawal from Pramipexole and you will need help and that any delay in prescribing the pregabalin will cause unnecessary suffering?

Kratom is illegal here in the UK, but during withdrawal from Pramipexole, it can be life saving.

It's available from

kraatje.eu/contents/en-us/d...

They send it out as 'Moringa herbal tea' very quickly and discreetly from.Holland. You can buy a small amount and take 1 teaspoon when the withdrawals are too much.

[RLSLADY in reply to Joolsg]

Thank youI'm hoping to relay all those concerns tomorrow, today now ! If I can get an appointment or in the least a phone call.

Thank you for the link also

[RLSLADY in reply to RLSLADY]

Got through to GP surgery appointment at 9.30. Going to print off the mayo ? Algorithm.. oh I hope I can get this sorted today. Thank you all for the support. I'll report back. Wish me luck Also ordered kratom. (Went over drawn fo it) Been reading up on it very mixed reviews !

[sigurdur in reply to RLSLADY]

Kratom was a lifesaver for me when I was coming off pramipexole, and then I continued using it as it totally killed RLS. Now however I have built up tolerance and need to quit it to know where I am at in my RLS battle. My advice is use it temporarily to get off the pramipoison, you may need to adjust dosages for the first nights. I started with small and ended up taking 12 grams before sleep. I kept that dosage for 5 months and never felt RLS. Good luck. We all feel your pain.

[RLSLADY in reply to sigurdur]

Ahh thank you for that. Iv never heard of it. Ordered red ? Sample and white ? I'll look and see exactly what iv got ? Joined a couple of forums on fb to see what it us, how to use it ect.

Pramepexole is definitely poison. So peed off it was prescribed in the first place.

[sigurdur in reply to RLSLADY]

I use red, but some people say the colors are just marketing. Before pramipexole my RLS was actually managable. I hope I can get to that state again just using natural remedies and diet to counter it.

[RLSLADY in reply to sigurdur]

Thank youGood luck with diet. Let me know how you go. Thanks for kratom information. Iv posted what I ordered ( in panic mode) furtdown I think.

[Spurdog1]

So sorry to hear your run-around. Have you got the nhs app? That might give you the name of the original doctor?

[RLSLADY in reply to Spurdog1]

HiThank you.

Iv succeed thankfully !

Was no.10 in the queue at 1second past 8.00am so was so surprised at getting in.

A lovely young GP who was up to date with rls was astounded at the run around iv had and asked who told me I couldn't have pregabalin on repeat.

It was the receptionist.

He just replied, riiiiiight ! Seemed annoyed. Oops.

Yes iv the NHS app checked, it is there on repeat?

He prescribed 56x 150mg today and put it on repeat, so iv no idea why yesterday was so flipping difficult ? Sigh

I'll look to see who messed up.

[Spurdog1 in reply to RLSLADY]

Im so glad you broke through. This rule of applying within 14 days is ridiculous. What if you are going in a private hosp, or on a 21 day cruise...i should be so lucky.

Not sure if nhs app is standard, does it apply to wales scotland? Perhaps one of us can advise me/us?

[RLSLADY in reply to Spurdog1]

I don't know either maybe someone can enlighten us both on here. Or ask your gp? Yes what would happen if you need more for a cruise, i should be so lucky too lol

[ChrisColumbus in reply to RLSLADY]

FINALLY - good news!

[RLSLADY in reply to ChrisColumbus]

Thank you

I am So very relieved.

[SueJohnson in reply to RLSLADY]

That is great !!!

[RLSLADY in reply to SueJohnson]

HelloYes isn't it, couldn't believe how lovely, informed, understanding the GP was.

Also shocked and annoyed at what I'd had to go through and all the misinformation.

I completely forgot to ask for new bloods, was exhausted and tearful though.

Thank you for being there to you and all who helped when I really needed it from those that understood.

If you don't have rls or a close loved one that suffers, folk just do not get it at all.

I'll look what iv ordered (in panic mode) re kratom as iv never heard of it

So please, if I may, ask those who use it, what iv got ? How to use it and when,.

also if there are any cons or pitfalls.

Thank you again.

I'll post back.

[RLSLADY in reply to RLSLADY]

I'm also takingNaproxen 2 x 500mg a day

(Spinal stenosis, cervical stenosis, osteoarthritis)

Omeprazole 1 x 20gm a day

Estradiol ( I know ! I'm hoping to come off) but at high risk of osteoporosis my mum suffered bad, as did her mum and my older sister suffers.

1 x2mg a day

Co codamol 30/500mg x4 a day

I don't take these unless I really am on a bad day then I'll have one during the day, two at night. More often than not I just have 1 or 2 at night.

OTC

Calcium 400mg & Vid D 2.5ug ? In 1 tablet 2 a day

had next to no vit D

Was loosing hair, soft nails, loose teeth, always tired, bones aching much more than usual.

Magnesium citrate 400mg 1 a day

Absoloutly Horrendous painful night time muscle cramps off pramepexole hopefully will not need them, helps enormously with cramps.

Ferrous fumarate 210mg

1 at night. (Not enough?)

Going to get bloods repeated ASAP was may last ones.

Thank you to any one who's still awake after reading all that.

Any advice is very welcome and much appreciated.

What's on the way ? 🤔

[SueJohnson in reply to RLSLADY]

Omeprazole is a proton pump inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. Gaviscon Extra Strength Tablets and Liquids is a safe substitute. You can switch directly but otherwise don't just stop taking Omeprazole as you would need to wean off it. Also Omeprazole interferes with the absorption of iron which you need.

[RLSLADY in reply to SueJohnson]

Wow, every days a school day,brilliant. Proton pump ? Will google that.Thank you ordering gaviscon immediately.

[Cobobay]

I have to do the same with Gabapentin and I hate it, as have to take my passport to collect script from Docs and the show passport when I take script to pharmacy before being given them and in front of loads of people looking at me, makes me feel like a drug addict as apparently, they are what they sell for £80 a tablet! I wish there was a better way.

[RLSLADY in reply to Cobobay]

Hi

Ohh that's awful and ridiculous 😕

I felt like I was being treated as an addict

So it must be a 100 times worse having to go through that rigmarole every time.

£80 a tablet wow that's shocked me.

Maybe try the NHS app if you haven't already.

I'd definitely go see a GP and sort that out.

Best of luck to you !

[Cobobay in reply to RLSLADY]

I'm in Guernsey so everything is charged, we don't have NHS it's all private.

[RLSLADY in reply to Cobobay]

Flipping heck no NHS! That must be costly.

[Cobobay in reply to RLSLADY]

Oh yes £60 just to book an FP appointment x

[RLSLADY in reply to Cobobay]

Eye watering ! I think that's where we're heading here. x

[SueJohnson in reply to Cobobay]

In the US. I get 90 days supply of gabapentin through my online pharmacy and they contact my doctor when I need a refill. And it costs me $12 total.

[RLSLADY in reply to SueJohnson]

That's great, its so very different everywhere isn't it, a close friend is Irish her family there are charged for visiting a GP , prescription costs etc. Again very costly.

[Cobobay in reply to SueJohnson]

Your lucky, as this is a controlled drug here there's no chance of that, or to be honest with any drug, it all has to go through your GP and they charge each time to do a repeat script as well.

[SueJohnson in reply to Cobobay]

Ouch - to charge for doing a script !

[RLSLADY]

Thank you so much to you all for your support I was so very upset yesterday, utterly frustrating, i couldn't sleep. I printed lots off to take with me.

I didn't need it the lovely clued up GP laughed and said, you've done your research, had a quick look said very good ,handed them back.

To add if I couldn't have got an appointment or a phone call.

I was going to go to the surgery (that had one other person waiting by the way)

And sit there for how ever long it took to see someone.

More reading about kratom now whilst I wait for it to arrive

Again thank you all very much appreciated

To those still struggling to get repeat meds you need. Without the hoops.

Keep trying , make a noise and best of luck.

Kath x