Positive Thalidomide

[pigduck]

Hello everybody,

I thought I should say I’ve scrolled through the last 3 pages of this forum and it’s been touching.

I wanted to encourage all of you.

My dad was diagnosed a year ago (sept 2005) with MDS RA. Unsure about the 5q- because the BMB didn’t show anything.

Anyway, had multiple transfusions since then and then he caught tucerculosis in Dec 2005/Jan 2006… was a tough time in February through to March…

He started taking Thalidomide and it took a long time to kick in. The dosage increased from 1 to 2 tablets a day and then it started working.

Since then, he’s been TX free for 12 weeks… today he went for a check-up and his rbc jumped 1 point to 12. HURRAY!

Do a lot of people react well to Thalidomide? Or does it stop reacting after awhile? Hopefully, this continues.

My dad is still eating his medication for TB and MDS and is trying to maintain a healthy immune system. Trying because he still does the things he shouldn’t do (like smoke once in awhile- I don’t think he sees how bad smoking is)…

He’s had some placenta injections and has been drinking red date soup (good for red blood cells apparently) and still drinking his pineapple juice daily (something we learned from this forums)…

I love these forums because we’re just so supportive of one another’s journey – i hope this story was encouraging… ‘cos my dad did suffer a lot at the beginning of the year…

[Neil]

Glad to learn your dad is responding to Thalidomide!
Hard to tell how long it will be effective. Know of one man who was transfusion independent for about a year.
Think one of the factors might be to maintain as low a dosage as possible as long as his counts are stable. If counts begin to go down a dosage increase might restore them.
When dosage gets to 300-400 mg nasty side effects may occur. fever, neuropathy, memeory problems.
Those on low dosages—50-100mg seem to avoid the side effects. It can be a difficult balancing act to keep the dosage as low as possible yet get the benefit of increasing counts.

[pigduck]

Hello neil,

thanks for replying… yeah, we’re just living for the moment and pleased with the results.

I guess we have to remember how easily our body adjusts to medication…

thanks for the heads up though… i’ll keep it in mind.

i realised … am i mistaking rbc for hgb? can rbcs go up to 12?

[krishananth]

Hi,

My dad has also been diagonised of MDS +RAEB. he has just started to take Thalidomide but had diahorrea , fever cough and cold and was forced to take transfusion as he Hb count was 5.4 and platelets – 20000.
he discontinued thalidomide then and has started again now.

Please let me know if Thalidomide is really working and what are the side effects.

Regards
Sandhya

[krishananth]

Wanted to know one more thing on Thalidomide.
we feel that taking thalidomide is making the person feel more weak as it is destroying the good as well as bad cells.is this correct.?
My dad is taking Thalidomide, had infections and was forced to have transfusions to boost his hb levels. Now he has again started to take thalidomide.
We are very confused whether to start taking Thalidomide or not now.?

Please do reply incase you know of it.?

Thanks in advance
Sandhya

[pigduck]

Hi krishananth….

Thalidomide takes a long time to work. How long has your dad been taking it? Have faith…

We were worried too ‘cos my dad still needed tranfusions initially… some times the dosage is also not enough to “kick in”…

side effects unfortunately are unavoidable. MY dad felt really awful in the beginning and he can’t take medication.

How many tablets is your dad taking?

It takes time for the body to adjust but some times with side effects it shows that the medicine is working.

Of course we get scared when things look like it’s getting worse but you just gotta wait… that’s medication… especially with mds… nothing is a miracle cure with mds.

[pigduck]

Hey krishananth,

just an encouragement, my dad’s last transfusion was in july…

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