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Auto-Immune disease after R-CHOP 2 years Post

toledotom's picture
toledotom
Posts: 9
Joined: Nov 2011

I broke out with Shingles this last weekend. I was in tremendous pain from my right rib area around my back. I didn't know what it was till monday morning when I got out of the shower and looked in the full mirror! My wife was all excited and said, "you have to go see the Doctor, Call him NOW"! I got in next day to see him and YES I have shingles. Taking Prednisone and Famiciclovir 3x a day. I am done today with the Meds and my side still hurts. I didn't know shingles attacks the nerves and boy, it hurts quite a bit. I am taking 2 to 3 extra strenght Tylenol for pain, it calms it but I don't want the Vicodin. Another Post symptom of 8 cycles of R-CHOP 2 years ago. It really taxed my auto-immune system. This is the 3rd infection I have had since last year. All 3 differant! I hope the shingles will run its course quickly, my side is sore from the change in weather. Feels like someone punched me in the ribs, sore, especially while I am trying to sleep. I guess it will take about 3-weeks for all the pain & symptoms to go away and the rash sometimes stains the skin? Hopefully it will go away and NOT COME BACK! Laughing

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Tom,

 Welcome to the group. Shingles are very painful! My husband broke out with them 2 years ago and was very miserable. They went away in about 2 weeks and didn't leave any discoloration to his skin. His broke out on the back of his neck and down his right shoulder. Once the blisters break and dry up things will get better for you. We were told that stress, trauma, and a weakened immune system can activate shingles. I'm glad you got on medication right away, because that is very important to do within the first few days of breaking out. Hope things start to improve soon for you.

Best wishes...Sue (FollicularNHL-grd2-typA-stg3-Dx 6/10-age62)

jimwins's picture
jimwins
Posts: 2037
Joined: Aug 2011

Hi Tom.  Shingles are no fun and they are alot mre common than people realize.  They are the later life result of the chicken pox most of us had as children.  You may want to be careful being around children or others who haven't been exposed to chicken pox because I think you're contagious during part of this.  I'm sure there's info online.

I hope you improve soon and keep us posted.

Hugs - Jim

ROF
Posts: 11
Joined: May 2012

If you have indolent NHL and have finished R-CHOP can you get a shingles shot?   I have been told both yes and no.   I am currently in remission and on Rituxan maintenance.  I know you can't get the vaccine after you have had shingles but can we NHL folks get it?  Tom hope you are feeling better.  I remember the misery my Dad was in when he had shingles.  

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi ROF,

My Onc said I can get the Shingles shot in May. I just finished my 2 year Rituxan maint last Friday and he wants me to wait 2 months before getting it. I didn't ask "why" the 2 month wait time, was just glad he said I could get the vacination. My insurance does not cover it...costs $250.00 at my local pharmacy, but will get it regardless of cost to avoid a bout with shingles. My cancer is indolent..FNHL. Best wishes...Sue

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi ROF,

IDK why answers to our questions are not black and white and the answers vary between docs and specialists.  Contrary to the info Sue received, all of my docs have said no to the shingles vaccine.  This is a live vaccine and immunocompromised patients including lymphoma patients should not get the vaccine.  We have discussed this before on this board and you can search to find the posts.

I had Hodgkins Lymphoma in 1989 and 1994.  I also have had shingles , I lost count, over 15 times.  For my last 5 outbreaks in 5 months I was put on a prophylactic dose of acyclovir for 2 years.  I stopped it after almost 3 months due to some side effects.  Since then, over 1 year ago, I've been shingle free.

Hope all are feeling better.

Cathy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1101
Joined: May 2012

My next-door neighbor got a very aggressive form of NHL about a year before I got HL.  I am not certain what chemo combination he got, but it required hospitalization, every cycle (he was an inpatient for three days at a time for every cycle). He told me he thought it was r-chop, but was not certain. I had not heard of chop requiring hospitalization before, so it is possible that he received something else.

About two years after his NHL recovery, he got a severe cae of the shingles, which took many months to clear.  Then, a year later, he required that both hips be replaced. The docs said that the chemo had "killed the blood supply to his hips."  I have never heard of that before, either, but clearly he has been through a horror story. He is only about 30 years old, and now walks fine, and has no medical issues at the moment.  I do recall his shingles causing him to be out of work for at least a few months. I do not know if that is exceptional, and I hope your's clears rapidly.

.

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