What to do next

[Margaret122maryL]

After 10+ years of pramipexole, I am at the tail end of augmentation and tapering. I tapered off over 6 weeks, have now been without any for 3 weeks. It’s been rough. I am feeling better, but not my best yet. My doctor has been supportive with Tramadol. She wants me to stay on it: I’m trying to keep the tramadol at a low level—wiill it continue to work for 20 years?
My doctor also ordered the bloodwork I asked for. She says the results are ‘normal’ and does not recommend iron supplement. After reading the new algorithm, I wonder what ‘normal’ is—and whether to pursue the iron question further.

These are my results:
Ferritin 96.6 ng/mL
Iron 126
TIBC 330 mcg
Iron Saturation 38%

(Is Iron saturation the same as ferritin saturation?)

Any comments are welcome. Thank you.

[stjohnh]

Your iron tests show that your BLOOD has a normal amount of iron. But we know your BRAIN is iron deficient because you have RLS. The main point of the blood tests is to be sure your blood does not have too much iron, in which case IV iron would be dangerous. The body requires different amounts of iron for different organs, many doctors do not know this. Also iron in the blood is blocked from entering the brain by the blood-brain barrier. RLS patients have defective mechanisms for moving iron from the blood into the brain, which is why you need more iron in your blood than people who do not have RLS. If the blood level gets high enough, more gets into the brain.

[Margaret122maryL]

Thank you. I suddenly get it, after reading your explanation. Or I think I do—in other words, the symptoms tell the story. The blood tests are not for diagnosis but are a way of monitoring for safety.

My doctor is not in favor of supplemental iron. In any form. She just wants me to take Tramadol.

I will have to tread lightly, asking for her cooperation in getting a second opinion from a specialist.

[stjohnh]

You can print a copy of the recommendations by following the link at the end of this message. Print it and give a copy to your doctor (in person, at a scheduled visit with the doc. Do NOT mail, email, give to the receptionist, etc. It should go from your hand directly to the doctor's hand). Assuming you get a specialist appointment, be sure and take a copy of the guidelines with you to the specialist.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:

https://reader.elsevier.com/reader/sd/p ... 0812205250

[Margaret122maryL]

Thank you. You have been most helpful.

I have decided to follow my GP’s advice for a SHORT time, then re-assess when my head gets clearer. She is willing to prescribe whatever dose Tramadol-Xanax-Ambien I want but I am almost certain she was unacquainted with augmentation and DAWS before my problem began, and I doubt she has thoroughly perused the Mayo RLS info I referenced. I will bring print-outs of that info and t he iron study when I have my next appointment…in October. She has been dealing with my problems virtually and by phone—I feel like I am on my own.

I am now managing to sleep with Ambien and Tramadol totaling 100-125 mg. (Immediate release). I take the Tramadol in early evening and at bedtime in divided doses.

My main concerns now are daytime anxiety and depression. I am hoping these symptoms are related to the pramipexole withdrawal and they will subside in 6 months or less. Half a Xanax 0.125 helps. I’m trying to take that on a limited basis as I get spacey.

My other concern is hot flashes…I’ve been on letrozole for 2 years for DCIS and have experienced hot flashes that wax and wane as a result of the letrozole, but they seem to be coming more often and more furiously now that I am off the pramipexole.

Immediate plan:
Try accupuncture (waiting for a call-back for appointment)
Continue the current TRamadol-Ambien-Xanax.
Consult my oncologist next week, as scheduled. See what she has to say about the letrozole, etc. She has offered anti-depressants for hot flashes in the past. I know some anti-depressents cause RLS symptoms but maybe Trazadone would help me get rid of the ambien and xanax. Any thoughts on that?
See how I am in 2-3 weeks and then, with clearer head, make appointment at Johns Hopkins if I am not 90% improved. Baltimore is a direct flight, little more than an hour, semi-convenient. I would, however, be open to California or Minnesota or anywhere in the US.

I would so appreciate it if you could tell me I am being reasonable. Thank you.

[Rustsmith]

Since you are already taking tramadol, be VERY careful with anti-depressants. Tramadol has a FDA black box warning about combining it with anti-depressants. Although tramadol is not approved for use as an anti-depressant, its chemical structure is very similar to Effexor, an SNRI anti-depressant. Combining tramadol with an anti-depressant runs the risk of serotonin syndrome, which is simply taking meds that results in too much serotonin in the brain.

[Margaret122maryL]

Thanks. Important info. I can handle the hot flashes rather than more complications.

[Todge]

Do you think the Pramipexole withdrawal is causing the anxiety and depression? I am 4 days post Ropinirole and am just being mauled by anxiety and abject sadness yesterday and today. I wondered if it was like a rebound effect of the Ropinirole. Do you have any more info on this? Do you think its temporary?????

[Rustsmith]

I wish that I could be of more help, but I went through pramipexole withdrawal about the same time that I experienced a drug withdrawal induced trauma that I am still working through.

What I can tell you from my reading is that dopamine agonists have been used to treat depression, so it would seem possible that if you are particularly sensitive, then this recovery period where your brain is relearning that it needs to produce dopamine could possibly also cause some depression.

But you are also taking some tramadol, which had anti-depressant properties (most doctors are not aware of this). But as I remember, you are not taking much tramadol, so you may not be getting enough to compensate.

My hope for you is that this is all temporary and will start to clear up very soon. What I can tell you from personal experience is that you can live like this for quite a while as your body adjusts. You just need to rely upon your friends and family for support and do as much as you can to keep your mind distracted from your mood. Last year during the quarantine lockdown, I did jigsaw puzzles all day long for days on end, just to stay distracted from my dark mood.

[Margaret122maryL]

Thanks so much. I especially like Rustsmith’s comment that I may not be taking enough Tramadol. Despite my GP’s prescription for a higher dose (up to 200 mg a day), I have been afraid I am taking too much. I definitely notice an improvement in mood when I take it. So rather than force myself to endure, I will raise the dose a bit.

Yes, Todge…the depression is certainly related to the pramipexole withdrawal. I was not previously a depressed person— People have accused me of being Pollyanna! But last week I was in a dark pit. I am now 3+ weeks from my last little dose of pramipexole and every morning I climb a few more inches out of that pit. Tomorrow will be better.

As for permanence…I have read about rare cases of long-standing dopamine agonist withdrawal syndrome. Those reports put me deeper into that dark hole. For that reason, I cancelled my participation in the Webinar about Augmentation last night. I was afraid of what I might hear. Today, I choose to concentrate on the rareness of these long-standing cases. I accept that it might take several weeks to heal, but I expect to be among the majority who do heal.

My goal is to keep the Tramadol dose as low as possible so I don’t have another problem when the depression lifts. I know I will have to stay on Tramadol to combat the restless legs, but hope I can eventually get the dose to 100 mg a day rather than 150 mg.

[badnights]

I have read about rare cases of long-standing dopamine agonist withdrawal syndrome. Those reports put me deeper into that dark hole. For that reason, I cancelled my participation in the Webinar about Augmentation last night. I was afraid of what I might hear. Today, I choose to concentrate on the rareness of these long-standing cases. I accept that it might take several weeks to heal, but I expect to be among the majority who do heal.

This is such a fine attitude. Even though we have a hard time believing this, it is so important to do whatever we can to maintain a positive outlook. Congratulations and keep at it!