!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Lenalidomide

More
11 years 10 months ago #40031 by musicguy60
Lenalidomide was created by musicguy60
my companion has supposely had itp going on for 4 years now, plus has dibeties, plus thryoid, no one has given her thyroid medicine to this point btw, which i read can be fixed, the itp, with thryoid medicine. now her doctor says she might have mds, and to take this medication lenalidomide, anyone heard of this medication for itp? please respond :) she has had all 1st and second line treatments, the thing she is down to is platelet transfusions if she goes under50K, it usually is once a week any thoughts on this medication, yes i read a lady had itp for 4 years, got admitted to hospital, not to make a long story, said it was a thyroid issue, gave her thryoid medication, and her platelets became normal, unreal, yes thryoid medicine was what she needed and her platelets became normal

Please Log in or Create an account to join the conversation.

More
11 years 10 months ago #40032 by Rob16
Replied by Rob16 on topic Lenalidomide
It sounds like what is going on is that her doctor thinks her low platelet counts might be the result of MDS (myelodysplastic syndrome) rather than resulting from ITP. Low platelets (thrombocytopenia) can be caused by a number of conditions, including MDS, and not necessarily by ITP, which is primarily a diagnosis of exclusion.

Lenalomide is a treatment for MDS, not ITP. Her doctor may be thinking that if her MDS can be gotten under control then her platelet counts might recover.

I question the need for platelet transfusions at 50k. That is not at all a dangerously low count, compared to what others on this website experience on a regular basis. Platelets are generally used only when there is an actual bleeding condition, or to temporarily increase platelet counts prior to surgery. Is she bleeding at 50k?

Here is a good resource, which addresses both MDS and thyroid problems as non-ITP causes of low platelets.
pdsa.org/resources/other-platelet-disorders.html

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
11 years 10 months ago #40037 by Sandi
Replied by Sandi on topic Lenalidomide
I agree with Rob. Low platelets can be a result of MDS and is not treated the same as ITP. I know a woman (in her 70's) who was diagnosed with ITP and it was only after her second bone marrow biopsy a year later that the MDS showed up and her diagnosis was changed. At that point, so did the treatment. She technically did not have ITP; she had thrombocytopenia as a symptom of MDS.

As for the thyroid, I can't tell you whether or not that should be treated. Not all thyroid problems require treatment - it depends on what is going on. Sometimes treating thyroid disorders can correct platelet counts, but that is rare.

MDS is probably the most serious of the three, so I'd worry about that first. Looks like they are on top of the platelets and treat that as they deem necessary.

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.