Is the doctor right?

[Theonlypetied]

I’ve recently started on Pragabalin as I’m down to 1/2 pramipexole tab. I was started on 75mg Pregab by my GP 10 days ago. After good results the first 4 nights the Pregab doesn’t seem to be working now. Another Doctor at my practice, when asked, has said that the next step up would be 150mg of Pregab which would take 6-12 weeks to take effect. As most drs don’t know sh1t about RLS/PLMD, I thought I’d check it out with you lovelies on here. Thanks.

[SueJohnson]

The usual recommendation is to wait for 3 weeks as it takes that long to be effective and then to increase by 25 mg every couple of days until you find the dose that works for you. And since it won't be fully effective until you are off pramipexole for several weeks, I would wait to increase it beyond 150 mg until then.

[Theonlypetied in reply to SueJohnson]

Thank you Sue. You are a legend!

[Munroist]

When I took pregabalin I started on 150mg a day in two doses and after a few days went to 300mg a day, all with no issues and as instructed by my doctor. It seemed to take 2 or 3 days to kick in fully so I’m surprised your doctor mentions 6-12 weeks.

[Meta-Anne]

well Theonlypetied I am on 250mg per day of pregabelan and have improved significantly. Still suffer terribly with FND but nothing can be done to help. I have had this illness since 1974 and diagnosed with MS in 1980. Spent 18 years in a wheelchair and in 2000 I started meditating every and used affirmations all daylong to heal. Two years later I was walking! Telling you this because the mind is very strong so maybe you could give both a try. Well good luck.

[Theonlypetied in reply to Meta-Anne]

Thats a wonderful thing you’ve discovered and done there. Just lovely.

[Wanted-sleep]

I take two near 10AM and four at 8PM, 300mg total. Sleep is not great though passable. So far pregablin is my no. 1. A few puffs of cannabis before bed and wink I am off to bed. I pack a pair of compression sleeves that go just below the knees to my ankles. I try to live low stress and low drama.

[SueJohnson in reply to Wanted-sleep]

Did you have RLS during the day before you started the pregabalin?

[Theonlypetied in reply to Wanted-sleep]

10am? That’s interesting.

[Wanted-sleep]

Yes to both questions.

Some infrequent light flare ups when rising in the morning and after luch times while at work about the time I begin yawning (my legs are doing a dancing house thing).

Both my GP and neurologist diagnosed my condition as RLS.

At about the time I turned 50 my condition flared up 10X.

Unknowing to what condition I had, I began medicating with cannabis (a year before legalization). A few puffs begore bedtime. A few months followed and I added coconut oil/cannabis. Nightine puffs and a table spoon of my conut oil tincture. Voila, 8 hours of regular sleep. I had a concern of the amount of coconut oil at that time. Replaced it with disgusting kratom. Same effect as my coconut oil/tincture. All was well. I did not enjoy the spend I had on these product.

Once diagnosed, GP prescribed gabapentin and set up a neurologist referal. Neurologist replace the gabapentin with pregablin and pramipexole combo. I shared with him that gabapentin was causing me to be unbalanced and being sick to my stomach.

I discovered Healthunlocked within a couple months and worked pramipexole out of my system. I used kratom when it felt unmanageable.

I now have a few puffs at night time and 2 x50 mg in the morning and 4 x50mg of pregablin a couple of hours before bedtime.

Ocassional mornings and afternoon flare ups occur, after lunch is a more likely culprit.

Odd thing is, I am currently staying on a 15th floor of a highrise. When going on the bacony I get an RLS like flare up in my calves.

I agree with other suffers that this condion is hellish. Without the current assortment of trying to treat this condition some rightfully so would seek an assisted end of living. Grim but true.

I have a small notion of cortisol causing the malfunction. Like putting gear box oil rather than conventional oil for routine oil change.

My RLS helpers are: electric blanket at the foot of the bed, epson salt foot rub during bathtime, keto diet (cannot stress how helpful), good footwear and slippers, and, being with low stress people. Now at the tail end of a career and yes, workplaces suck.

GP assured me my feritin levels are fine. My keto diet is a measure to stave off the possibility of future diabetes. However, I see low but normal red blood platlets on my chart, which gives me pause.

You have been invaluable. I thank you beyond measure.

[SueJohnson in reply to Wanted-sleep]

Doctors often say your ferritin levels are fine but what is OK for others is not OK for those of us with RLS. Do you know what your ferritin is? If not, Ask your doctor for it. It needs to be at least 100.

[Wanted-sleep in reply to SueJohnson]

My most current Iron panel shows as

Iron saturation 21%

Ferritin. 208ug/L (range 18-543)

Plasma Serum Iron 11umo/L (range 7-29)

Binding capacity 55 (range 45-77)

The following shows as abnormal on my panel

Globulin 21g/L (hypotension) / Albulimin 2.0 (underlined)

Lymphocytes 0.6X10E9/L

Panels taken Aug21/21; June22/22; and Sept 9/22.

Pretty much a match each three times.

Should I consider IV iron?

Thanks.

Joseph

[SueJohnson in reply to Wanted-sleep]

Your iron is fine.

[joebeddall]

I tried all sorts,but used pregabalin for about yrs.before losing reasonable comfort.Still use 50gm.twice a day.Still no cure has been found.