[lisab]

I took Lyrica several years ago for a pinched nerve in my back. Didn’t help my arthritis. I didn’t like the side effects of it either. At first I was light headed and dizzy but as I got used to I was only light headed when I bent over. I also had to wien myself off it when it was time to stop. It did help with the nerve pain but hated the side effects. Anyone I know that has taken it did for neuropathy Or pinched nerves.
Good luck! Hope it works for you.

[lisab]

I have just celebrated my 3 year diagnosis. I had become very weak, lethargic and had trouble breathing. After a bone marrow biopsy they finally figured out I had MDS. My hematologist put me on lenalidimid, asa81, plus a number of vitamins as well. Although I will never have the stamina I once had I am able to live a pretty full life.

[lisab]

I had 2 in 2 days. My first one was done by a resident and not a good experience. After the lidocaine shot the resident who was obviously nervous and took over 20 minutes. By this time the lidocaine was wearing off. The doctor who accompanied him noticed I was starting to feel it I told them just to finish. The sample they got was rather small and my hematologist came by the next day for another. He gave me a shot in my other hip and was in and out in about 5 minutes. By the time the lidocaine wore off he probably had it in the lab.
The instrument he used looked like a miniature version of a soil core sampler.
Hope all goes well for you and your husband Marie.

[lisab]

Wow! That is terrific news Nancy! I’m so happy for you! Sounds like maybe you found the magic potion.
What a wonderful Christmas present for your family!
Best wishes and enjoy the holidays!

s the season.

[lisab]

Lucena
I have always tried to find sunshine even on the cloudiest days. A good attitude helps too.
My very best wishes go to you. I’m hopefully that you will find the treatment that works for you.

[lisab]

I’m a mds 5q patient for 3 years. I used to bruise very easily but with my hemoglobin up in normal range I don’t seem to. I used to work a physical job which was also a factor. I would bump up against something and be black and blue. Didn’t have to hit it hard either.

[lisab]

Thanks Bonnie and Stacey
We are pleased. I never heard of MDS until 3 years ago. It has been a learning experience for my family and I. I hope to be around for another 20 to 30 years.
I hope that others are as lucky as I have been.

[lisab]

Been on lenalidimid along with asa 81, folic acid and b12. Been transfusion free for 3 years in November.
Have had a few minor side effects with lenalidimid small rash that comes and goes as well as some diarrhea off and on.
I’m maintaining a hemoglobin of 137 to 141 which I understand is between 13.7 and 14.1 in US terms.
Hope this helps someone else. As I keep saying, we are all different and what works for me may not work for someone else.

[lisab]

Hi Robert
I’m a del5q patient. This is my 3rd anniversary. I’m on lenalidimid with helps create blood cells. Been transfusion free for 3years in November. I also take folic acid and b12 to help. When diagnosed my hemoglobin was 35 and now it is 137 to 141. I’ve had very few side effects on this medication. Hope this helps.

[lisab]

I have to agree with the above posts. Your mom has been blessed with a long life. Many cannot say the same. I have found that people get tired of the fight and know it is time to go. The decision is hers. She is the one who has to endure.
Best of luck to you all.

[lisab]

Mary
The vaccine helped prevent me from getting it worse. Many unvaccinated people have died of covid. I am grateful I got my shots and am waiting to get my 5th. It is highly contagious and the vaccine is meant to help protect. I am immune compromised and didn’t get so sick I had to be hospitalized.
My point is while many are tired and just want this to go away,IT IS STILL OUT THERE. We still have to live our lives. I continue to go out when I have to, socialize some but mostly outside.
We have to continue to be vigilant. Mask and sanitizer.

[lisab]

Nancy
Did the doctor consider raising or lowering the dose?, I started on 10 MG of revlimid but my white count went up. He then reduced it to 5mg. I also take folic acid and b12 which are supposed to help energy.
I hope changing the frequency of his dose helps. The problem is we are all different. What works for me may not work for him. It is a tough journey to find what works.
Hope this helps.
Good luck

[lisab]

To update my last post, I’m almost 3 months after omicron and I’m still having difficulty breathing. My GP has prescribed 2 inhalers and done an xray. Seems I may be a “long hauler”. Going back to see my GP and waiting to see my hematologist/oncologist next month.

[lisab]

Hi Nancy
I’m a del5q patient for almost 3 years. On lenalidimid (revlimid). After the first month my hemoglobin did drop some. My hematologist/oncologist said it sometimes happens. After a transfusion of 2 units and another month on revlimid my hemoglobin started to go up. It continues to remain stable.
Never was on procrits, so I can’t comment on that. I do know that revlimid can cause skin irritation. I do get a bit of rash myself. It wouldn’t surprise me if it would irritate a skin cancer.
Best wishes

[lisab]

Hi Linda
I’m a del5q patient on revlimid for almost 3 years. Doctor prescribed asa 81 for me as well to help prevent blood clots. There are a number of other drugs out there as well that are supposed to prevent blood clots. I’m sure something would be prescribed to him as well.
Best wishes

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