Hello, I am writing on behalf of my 87 year old mother, who suffers greatly from RLS.
These are her blood test results, showing low saturation and high total iron binding capacity. She is on gabapentin and Ropinirole and Tylenol 3, with no relief. She has CHF with water retention. Ehat are your thoughts on iron infusions ? Are they dangerous? She sees her doctor next week.
Thank you!
Anyone with a % saturation below 20% should definitely get an iron transfusion and that will help her RLS. .8% is really low. No they are not dangerous.
Having a high total iron binding capacity is normal with her % saturation low.
Did she get her ferritin tested? If so what was it? She should be tested again 8 weeks after she gets the iron infusion. She should ask for a full iron panel. She should stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and her transferrin saturation to be between 20 and 45.
Thank you kindly. I feel so desperately bad for her!
I agree with SueJohnson.As your mother is on Ropinirole, that is likely to be the cause of her severe RLS.
It works brilliantly at first, then it 'feeds' the disease and worsens it. This is augmentation. The only solution is to slowly reduce Ropinirole by 0.25mg every 2 weeks.
The withdrawal is tough, but the iron infusion and gabapentin will help. Gabapentin is often given alongside Ropinirole, but it isn't effective until you're completely off Ropinirole.
Read up on augmentation on rls.org and the RLS UK website.
sleepreviewmag.com/sleep-tr...
She is only taking 0.25 Ropinirole for years, before bedtime. Gabapentin 300mg once in the morning and one at bedtime. Her RLS has worsened in the past year. She does not look forward to bedtime.
Ropinirole stops working, especially when you have been on it for years.
As her RLS is getting worse, first increase iron levels, preferably by an iron infusion. The new formulas are much, much safer.
Your mother should also switch taking gabapentin to night time only. Take 600mg 2 hours before bed. 600mg is an extremely low dose so there is room to increase to the average of 1200- 1500mg, taken in split doses of 600mg 2 hours apart.
It would also be sensible to get your mother off ropinirole after she has raised serum ferritin above 100, preferably 200. Cut the 0.25mg pill in half and take it for 3 or 4 weeks and then stop. The RLS will probably increase severely for a few weeks so ask her GP to consider a low dose opioid like codeine or tramadol to take for a few weeks to settle the worsening withdrawal RLS.
The Iron infusion and increased gabapentin should then cover her RLS.
Join rls.org as there are local US Help groups and you can access the helpful webinars by the top RLS experts.
Thank you. Are iron infusions safe for macular degeneration. Or, for that matter, iron supplements. Mom has macular degeneration. I will also ask her retinologist. Hopefully, when mom sees her primary care doctor next week, he will agree on the iron infusions, but in the meantime, had put mom on Ferris sulphate.
I'm sorry, I don't know. A retinologist would be able to answer that.I wouldn't imagine it would, but you never know.
ncbi.nlm.nih.gov/pmc/articl....
There does seem to be a link between iron overload and Retinal issues, so do check first with your specialists.
How much gabapentin is she taking and at what times in relation to her bedtime?
How much ropinirole is she taking?
To elaborate on what Joolsg said: The signs of augmentation are when one has to keep increasing their dose to get relief, or when ones symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of their body (arms, trunk or face) or when the intensity of your symptoms worsen. Is this the case with her?
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you and her everything you want to know including about its treatment and refer her doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices including therapulse, using a standing desk, listening to music, meditation and yoga. Have her keep a food diary to see if any food make her RLS worse
Many medicines and OTC supplements can make RLS worse. If she is 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.
Black strap molasses, is loaded with iron and healthy minerals, moringa is also loaded with iron and many vitamins and minerals, brewers yeast is loaded with vitamins B. I don't believe these products have interactions with medicines but it's all best to check everything, all medicines can worsen RLS. It can be caused by to many medications.
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