Don't think it's augmentation

[Rustsmith]

Polar Bear, thank you for the suggestion. I have already read about augmentation with DAs, but it does not apply to me yet because I have only been on pramipexole for two weeks. Early on, I was able to reduce the symptoms in my legs with iron supplements. However, five years ago it spread to my arms and body and I have been pestering my GP, allergist and neurologist for help. I ended up with a sleep doctor to treat my insomnia, who provided the pramipexole, which has finally provided me with relief.

Steve

[ViewsAskew]

Hi Steve - you can augment in as quickly as a day. It's very rare, but it does happen.

Sounds like your symptoms worsened BEFORE you too the DAs, though, right? Then it's not likely to be related! Surgery, blood loss, broken bones, new drugs, even changes in diet - many things can cause WED/RLS to worsen. But, sometimes, we just can't find anything.

Since you were supplementing with iron and it originally worked, maybe look into an infusion. Oral iron works best when serum ferritin is very low - like mine was when I started (I think it was . Now that it's in the 30s to 40's, I can't get it higher very easily - this is typical. Once you get to the 50 range, an infusion may be the only way to get it up to 100. And, you may need several infusions. There are several posts about infusions - could be worth a look. And, because augmentation risk is MUCH higher when our ferritin is below 100 and we take a dopamine agonist, even more important to get it up there.

[EeFall]

My 3 infusions got it up from below 100 to 335 (which is actually higher than normal) but then my meds are working super so maybe it helped. The doctor seemed pleased that it was that high. I took iron supplements for years but it never helped much.

I am curious. How might you be thanking Polar Bear but you have one post?

[ViewsAskew]

EeFall - Rustsmith posted this in the Welcome topic - the mods move any posts other than the welcome posts so people will see them and reply.

[EeFall]

EeFall - Rustsmith posted this in the Welcome topic - the mods move any posts other than the welcome posts so people will see them and reply.

Thanks, I knew there must be a logical explanation

[badnights]

My 3 infusions got it up from below 100 to 335 (which is actually higher than normal) but then my meds are working super so maybe it helped. The doctor seemed pleased that it was that high.

He was pleased because for you, 335 is normal!
Dr. Earley is trying to teach us all that "normal" means different things for different people, and for people with WED, normal is whatever level provides the greatest relief of symptoms.

rustsmith:
If you check into iron infusion treatments, beware that almost every doctor who performs the treatment has done it for iron-deficiency anemia. The protocol is different for RLS/WED, and they will probably not be aware of the differences. Treatment with iron sucrose, for instance, is likely to be ineffective for WED. Dr. Earley at Johns Hopkins pioneered the technique for WED patients and is very willing to talk with other doctors about what iron molecule to use , what dosage etc. See also the posts at viewtopic.php?f=5&t=8439&p=68352#p68352 and posting.php?mode=edit&f=4&t=8476&p=69075

[Rustsmith]

Thanks for all the comments and suggestions about infusions. Unfortunately, I am still waiting to hear back from the doctor on my ferritin levels. I guess that I need to bug them again tomorrow. They promised me a copy of all my results via snail mail last week, but still nothing.

Although I understand the comments about augmenting and will be watching, the increased severity of my symptoms is what forced me to a sleep doctor in the first place. I therefore had the problem before the DA. So far, the DA is effective for about 23 hrs.

Rustsmith

[trinitysite]

I just found this article and it all makes sense...I've been on Mirapex for almost 5 yrs....I have been on Tramadol for severe lower back pain for just over a year...Good grief I'm just helping this augmentation along from the sounds of it. I'm glad I'm seeing a neurology specialist in this field so I can get help. My symptoms of leg movements is now starting to affect me during the daytime hours and that's after I have had my one Mirapex at night so I can get my hour or two sleep. I went to the pool yesterday to work out for my hour (just joined) and my legs went crazy on me when I got home...from one leg to the other and then both of them at once. I can see this is going to be a challenge along with identifying my sleep issue with this disease. Thank you for the publication on augmentation, I appreciate the help I'm finding here. Regards, Jackie

[ViewsAskew]

I just found this article and it all makes sense...I've been on Mirapex for almost 5 yrs....I have been on Tramadol for severe lower back pain for just over a year...Good grief I'm just helping this augmentation along from the sounds of it. I'm glad I'm seeing a neurology specialist in this field so I can get help. My symptoms of leg movements is now starting to affect me during the daytime hours and that's after I have had my one Mirapex at night so I can get my hour or two sleep. I went to the pool yesterday to work out for my hour (just joined) and my legs went crazy on me when I got home...from one leg to the other and then both of them at once. I can see this is going to be a challenge along with identifying my sleep issue with this disease. Thank you for the publication on augmentation, I appreciate the help I'm finding here. Regards, Jackie

It's amazing how many doctors do not understand augmentation - and not amazing in a good way!

It's possible youre neurology specialist will not know, either. Many do, these days, but we all too often hear of those who do not. Don't be afraid to switch doctors if you need to. Not trying to scare you - just being realistic. Most of us have had that, "Oh, thank the heavens I'm seeing a specialist - he or she will make it all better," only to find we're not any better at all. The let down is terrible. Many of us find it's helpful to be a a hopeful skeptic .

[Polar Bear]

Views is very wise in these matters. Please do read up on augmentation and perhaps also take along printed out information that you can highlight so that doctor doesn't have to read everything (unless he wants to).