Meds, ferritin, supplements, mthfr, etc

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
mutsy67
Posts: 23
Joined: Sat Jun 19, 2010 5:37 am

Meds, ferritin, supplements, mthfr, etc

Postby mutsy67 » Sun Jun 24, 2018 5:56 pm

I need so much help!

RLS was my first disease, not nearly my last, starting when I was a toddler; I am 57 and RLS became a permanent fixture at 30 yrs.

I currently take Horizant 600 mgs, requip 3 mgs, Amytriptyline 75 mgs (for SFN, small fiber neuro), lamotrigine 150 mg (divided, also for SFN), oxycodone 20 mgs
plus other meds for Sjogrens, gastroparesis, raynauds, rheumatoid disease, vasculitis, tinnitus, daily migraine syndrome, endocrine disease (hypothyroidism, hypo pituitary, adrenal fatigue)

I started seeing a naturopath in Jan and he did a ton of bloodwork (23 vials) and found several issues (iron levels fine, but ferritin at 39, mthfr mutation, folate anemia, b12 pooling, are most relevant here). His focus has been endocrine diseases and he wants me OFF of opioids so I can start on LDN (low dose naltrexone) to treat those. I also started on methylated B vitamins and ProFErritin (was ferrous 325 since Jan, the switch was made because a thyroid group recommends this heme version, esp because of the mthfr) and several others.

My RLS is unbearable and I think there are at least two causes:
1) Augmentation on requip over 1 mg. I have symptoms all day :( and in arms, neck and shoulders.
2) lowering of opioids (65 mg per day between oxycodone 40 mgs and oxycontin 20mgs -- down to 20 mgs oxycodone currently). I added CBD oil (no thc) to assist with pain levels. I am supposed to be 0 mgs opiods 2 weeks from now.

Should I drop to 1 mg requip immediately or no requip. If no requip should that be cold Turkey?? Would i return to requip after a holiday? I've been on requip for many, many years and horizant for about 2 years.
If i reduce or stop requip would i add something else, or just stay on the horizant??
Should i do iron infusions, any one find this helpful? How much was infused, how often??

Actually all advice & ideas welcome as I'm not sure what questions to even ask. I'm reading all the posts i can, but there is so much info here I'm overwhelmed..

Thank you, thank you,
Shari, sleepless in Phoenix

mutsy67
Posts: 23
Joined: Sat Jun 19, 2010 5:37 am

Re: Meds, ferritin, supplements, mthfr, etc

Postby mutsy67 » Sun Jun 24, 2018 6:37 pm

I also have been taking cyclobenzaprine 10 mgs for many years (muscle relaxer)
Have lidoderm patches and pain creams to use
And use stretches (contract & hold) and hand massagers (that are so painful it's hard to use them, feels like I'm going over areas that are seriously bruised, but of course are not)

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Meds, ferritin, supplements, mthfr, etc

Postby Rustsmith » Sun Jun 24, 2018 6:59 pm

Your situation is very complex. My number one suggestion is to start the process of seeing an RLS expert. If you are anywhere even remotely close to one of the Foundation's Quality Care Centers, you will find it very beneficial to go there. Unfortunately, demand is so high that the first new patient appointment may be several months out.

As for getting off of Requip, that is going to be very difficult for you since it means that your sleep will be even worse than it is now. It is possible to go cold turkey, but you run a small risk of getting Dopamine Agonist Withdrawal Syndrome. That risk is probably small since you didn't mention anything about any compulsions while on Requip (that includes compulsive eating).

One very important thing to think about is to stay on the oxycodone until you get off of the Requip. The opioid will cover for the worst of the dopamine withdrawal. Without the opioid, you will get virtually no sleep for about a week after you get to zero Requip and then after a week you start getting a few hours of sleep each night. You could then taper the oxy about a week after stopping and make your life much easier.

As for returning to Requip, most of the experts recommend that you not return to a dopamine agonist after experiencing augmentation. If you do, you should give lots of thought to moving to the approach that many of us use, which is low doses of a number of different meds. I use a low dose of gabapentin combined with the smallest doses of Mirapex and methadone as well as occasional THC edibles to help with sleep. There are others here (who will also probably chime in), who use a somewhat similar approach.

As for infusions, many find them helpful. That is especially true for those who have a difficult time taking iron supplements (they have stomach issues) or else the simply cannot get their ferritin levels up without infusions. These are not one time affairs and have to be repeated occasionally. The time between infusions varies and is determined by how long it takes before their ferritin level drops too low again.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 576
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Meds, ferritin, supplements, mthfr, etc

Postby stjohnh » Sun Jun 24, 2018 8:10 pm

Shari, I echo Steve's comments. With the obviously complex medical situation you have, including a large number of medications that can cause interactions and problems, I fully agree that seeing an RLS specialist is your first order of business.

It certainly sounds like augmentation is a major problem for you, and treating augmentation requires that you get completely off the dopamine agonist (Requip) for at least a period of time, and the general recommendation is to stay permanently off. The alternate recommendations for someone who has augmented is to use gabapentin or its relatives Lyrica or Horizant. In your situation however this is almost guaranteed to not give adequate control of your urge to move symptoms. Using neupro patches which is also a generally accepted recommendation for people that have augmented, is similarly not likely to be a very productive. Unfortunately in your situation it's almost guaranteed that you're going to need to be on an opioid.

I tried low dose Naltrexone, it didn't seem to work for me, however I admit I didn't give it a very long trial. There have been a few reports of people having a good response to it for RLS, although the majority that have tried it seem to say that it doesn't seem to help much.

I am one of those who augmented on a dopamine agonist, Mirapex. I used a Neupro patches for a while, but got severe rashes and was starting to augment on those as well.

After a week or so off of dopamine agonists entirely, I restarted the Mirapex at an extremely low dose, one half of the smallest size tablet. Along with that I subsequently added medical marijuana at low dose, low dose gabapentin, and low dose kratom. That combination caused good control of my urge to move jumpy legs, and fairly good control of insomnia, however left me feeling very tired and run-down the next day. I subsequently added dipyridamole, which is experimental for use in RLS. That caused a tremendous improvement in my feeling of well-being while awake the next day.

Iron infusions are recommended for people with persistently low ferritin levels even after trying a couple of months of intensive oral iron therapy. People with RLS need to have a ferritin of at least a 75 or 100. There is a good chance that your actual blood iron levels are lower than are reflected in your low ferritin level. That is because ferritin is also what's called an acute phase reactant, and is artificially increased by all types of inflammation, which you obviously have from your Sjogren's and other problems.
Blessings,
Holland

mutsy67
Posts: 23
Joined: Sat Jun 19, 2010 5:37 am

Re: Meds, ferritin, supplements, mthfr, etc

Postby mutsy67 » Mon Jun 25, 2018 5:52 pm

Thank you Steve and Holland,
I am about 6-7 hour drive to San Diego and agree with your advice that a visit there would be best, just not sure I can swing it right now. I may go ahead and make an appointment though since it could be months out.

I too had reactions to Neupro Holland. Tried spraying the patch area with a topical antihistamine before placement but the symptoms worsened into an itching throat and face with a throat closing type feeling. Not sure that was full blown anaphylaxis but it scared me enough I stopped it and reported my reaction to the company. That's when I added Horizant which I have had success with, until recently when daily augmentation systems began. I didn't tolerate regular gabapentin well, side effects were just more annoying than I could tolerste.

I tried lyrica years ago for the small fiber neuropathy and the foggy brain was so severe I felt I couldn't function. Is the dose you take for RLS really low?

I will have my ferritin levels rechecked in July so that will help me decide about infusions. I suspect the mthfr mutation is keeping me from absorbing what I'm taking and getting it where it needs to go, but I'll wait for the bloodwork before I do any more with that.

In the meantime I'll continue on the oxycodone until I've got this current flare under control, that seems the easiest short term answer.

legsbestill
Posts: 479
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Meds, ferritin, supplements, mthfr, etc

Postby legsbestill » Tue Jun 26, 2018 9:18 pm

You are probably already aware but amitryptiline exacerbates rls in most sufferers (not that I’m suggesting you discontinue it without discussing with your medical advisers.

Steve and Holland have said everything I would have otherwise. In fact, there is a good chance you won’t get better advice even from an rls expert (though would still be well worth going to see one if it is at all possible).


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