Stem Cell Transplant

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kelleydaniel
Posts: 2
Joined: Tue Jun 12, 2018 10:42 pm

Stem Cell Transplant

Postby kelleydaniel » Wed Jun 13, 2018 9:25 pm

This is Kelley Daniel and as I stated yesterday, my dad has a severe case of RLS and has been scheduled for a stem cel transplant for multiple myeloma on July 25. One of the triggers of his RLS is stress, and he has been under and will continue to be under large amounts of stress throughout the end of his chemo and the stem cell transplant process. That being said, we are concerned that his RLS will be even worse when his body is under even more stress.

You asked me to let you know what dad has been doing to manage the RLS, and he has been on everything from requip to horizant and premeprexole. He is now taking methadone and still has not seen much relief.

I am desperate to find someone who has had both RLS and Multiple Myeloma and has undergone a stem cell transplant. We are very concerned about the unknown of how the RLS will react during the stem cell transplant. Any and all information would be extremely helpful.

Polar Bear
Moderator
Posts: 7163
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Stem Cell Transplant

Postby Polar Bear » Thu Jun 14, 2018 4:30 pm

kelleydaniel - welcome. We are glad that you found us but sorry that you and your father are in such need.

With regard to the RLS has your father had a Ferritin test done, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask the doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for sufferers of RLS. Some people need to be higher even that 100.

Your dad has tried the DAs i.e. Requip and Pramipaxole. He has also tried Horizant. So he is now taking Methadone without much benefit. I have not personally used Methadone but we have members who do use it and will be able to advise and discuss dosage. What dosage is your dad's methadone? How long has he been taking it?

Also if your father is given any pain relief with regard to the stem cell transplant it is very possible that this may cover, even partially, the RLS symptoms while it is prescribed.

I am unaware of any of our members who has both RLS and Myeloma.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

kelleydaniel
Posts: 2
Joined: Tue Jun 12, 2018 10:42 pm

Re: Stem Cell Transplant

Postby kelleydaniel » Thu Jun 14, 2018 6:28 pm

Thank you so much for your response. Yes Dad has had his ferritin levels tested. He is being seen by Dr Rye and Emory University, and we feel that he is in good hands. His RLS has been very active over the pat year, and has definitely gotten much worse since his multiple myeloma diagnosis and chemo therapy.

Dad is taking 7.5 mg of Methadone. He started on 5 mg, and then bumped up to 10 mg, and then went to 7>5. He has ben taking 7.5 for 5 days. In total he has only been taking the methadone for approximately 2 weeks.

Polar Bear
Moderator
Posts: 7163
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Stem Cell Transplant

Postby Polar Bear » Thu Jun 14, 2018 9:37 pm

I am not familiar with the use of methadone but others will be along who should be able to advise further.
Your dad is in good hands with Dr Rye.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 15214
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Stem Cell Transplant

Postby ViewsAskew » Sat Jun 16, 2018 12:40 am

I appreciate and feel trememdous respect for all the RLS docs out there. But, Dr Rye? He is at at the top of the list. He is such an awesome doc - who has RLS. Knowing your dad is seeing him makes me feel a lot more hopeful for your dad. And, that you are here helping? Your dad is in a good place with you going to bat for him.

I take methadone - had since 2006 or so, IIRC. It helped me from day one, though. Not sure how what info you are looking for. Let me know if you have any questions I might be able to answer.
Ann - Take what you need, leave the rest

Managing Your RLS

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.


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