Meds and Ferritin

Helen518 · Post by **Helen518** » Sat Oct 04, 2008 6:20 pm

Sleepyred - didn't the benedry make your legs crazy? I've been told to steer clear of antihistamines.

Post by **ViewsAskew** » Sat Oct 04, 2008 6:30 pm

It surely bothers most of us, but a few people can take it and not be bothered.

Jodee · Post by **Jodee** » Sun Oct 05, 2008 4:18 am

I was also given a shot of benedryl before my first iron infusion (I think it's pretty standard). It put me to sleep during the infusion. I woke up after half an hour with RLS, so I just stood while getting the infusion. The RLS subsided after about 20 minutes. I'd rather deal with that than hives.

Helen518 · Post by **Helen518** » Sun Oct 05, 2008 4:13 pm

that's good it only lasted 20 minutes. the last time i had benedryl i was miserable for 24 hours. good point - i guess it is better than anaphylactic shock . . .

Sleepyred · Post by **Sleepyred** » Mon Oct 06, 2008 11:30 am

Helen518 wrote:Sleepyred - didn't the benedry make your legs crazy? I've been told to steer clear of antihistamines.

No the benedryl did not bother me - except for making me so tired for 24 hours. I do not use it at all, except when I have an infusion. However, I've never had a reaction to the iron, so I only get 12.5 mg. with the iron. When I get an iron infusion - my ferritin is low enough that I would not be able to tell if my RLS gets any worse from the benedryl since it's already so bad. It usually gives me relief after a few days after the infusion and lasts for 3-4 months. I get 250 mg. per infusion (infed).

Good luck.....so sorry about your reaction!

Helen518 · Post by **Helen518** » Mon Oct 06, 2008 6:50 pm

Does anyone else feel like their RLS gets worse the more tired they are . . . it seems to be a vicious cycle.

I suppose it could just be that the more tired I am, the fewer psychological resources I have available to cope with it, and so I just perceive that it is worse . . .

Helen518 · Post by **Helen518** » Mon Oct 06, 2008 7:19 pm

Sleepyred wrote: It usually gives me relief after a few days after the infusion and lasts for 3-4 months.

Sleepyred - how many is a few days? It is now Monday and if anything I feel worse . . .

Post by **Polar Bear** » Mon Oct 06, 2008 7:35 pm

Hi Helen

I don't know that I can say mine gets worse when I am more tired or not. To tell the truth, I find it difficult to determine a pattern or a particular cause. Just some times are worse/better than others and I am thankful to have medication.

Jodee · Post by **Jodee** » Mon Oct 06, 2008 8:55 pm

Helen - The hematologist told me it can take a week or two after an infusion. In my case, I had two infusions a week apart, and while I felt better since I was no longer anemic, my RLS didn't change.

Sleepyred · Post by **Sleepyred** » Mon Oct 06, 2008 11:31 pm

Helen518 wrote:
Sleepyred wrote: It usually gives me relief after a few days after the infusion and lasts for 3-4 months.

Sleepyred - how many is a few days? It is now Monday and if anything I feel worse . . .

It's hard to say - but for my 1st infusion - it took at least a month (my ferritn was so low) 2nd - about 2-3 weeks, and my 3rd - 1 week at most before I felt better. Hope this helps.......

I do have to keep my ferritin above 150 or my RLS comes back with a vengeance.

Jodee · Post by **Jodee** » Tue Oct 07, 2008 4:32 pm

Sleepyred - When you say "felt better", do you mean the infusions helped your RLS or just your energy level? And are you able to get infusions when your ferritin goes below 150?

Sleepyred · Post by **Sleepyred** » Tue Oct 07, 2008 11:17 pm

Yes, infusions help both my RLS and energy level. However, I can tell when my ferritin is going down when my RLS symptoms act up.

Are you asking if I get infusions when my ferritin is above 150? My "magic" number for my ferritin seems to be 150. - it was 149 in May and 117 in August - the same day I received my last infusion. It seems that in my specific case - my ferritin needs to be above 150 for my symptoms to be under control. I need my infusions every 4-5 months. I hope this makes some sort of sense! I also ask for a ferritin blood test anytime someone takes blood.......

Jodee wrote:Sleepyred - When you say "felt better", do you mean the infusions helped your RLS or just your energy level? And are you able to get infusions when your ferritin goes below 150?

Helen518 · Post by **Helen518** » Wed Oct 08, 2008 1:38 am

this information is so helpful to me. THANKS!!

My doc said it could be as many as 10 days before I feel a difference, but I can be patient and wait a month if that's what it takes.

I did not ask what my ferritin level was in terms of a number. Next time I will. I was told my deficiency was "moderate to severe". Sounds lilke a good practice to ask for ferritin level whenever you have blood work ordered.

I'm supposed to call the doc on 10/13 to give him an update. I'm not sleeping too well right now as I am off meds to see what my baseline level of aggravation is, sans dopamine agonists. Very tempting to take narcotics left over from this summer's hand surgery . . . trying not to be tempted.

Jodee · Post by **Jodee** » Wed Oct 08, 2008 2:00 am

I really was asking if you can get infusions when your ferritin level dips below 150. Mine is below 150 but the doctor thinks it's fine now since it was so low before and I'm no longer anemic. He won't give me another infusion. So the infusions haven't help the RLS, but the hematologist doesn't care about RLS.

Where did you find your wondrous doctor?

Sleepyred · Post by **Sleepyred** » Wed Oct 08, 2008 11:13 am

My hemotologist has agreed that for me, I need to keep my ferritin around 150. When it goes down, I start kicking and he allows the iron infusion. I am very fortunate that he goes by my symptoms and not my levels. I questioned my worry that an iron infusion would make my ferritin go too high, but he said not at the dose he gives me - 250 mg. taking about 1 hour. Our goal is that we keep my ferritin around 150 and not to let me get back to the kicking stage - so I get it checked every 3 months. But I do continually get the call from the nurse saying "your ferritin levels are excellent" even when they are too low for me.

He goes by my "symptoms of RLS

Jodee wrote:I really was asking if you can get infusions when your ferritin level dips below 150. Mine is below 150 but the doctor thinks it's fine now since it was so low before and I'm no longer anemic. He won't give me another infusion. So the infusions haven't help the RLS, but the hematologist doesn't care about RLS.

Where did you find your wondrous doctor?

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