One year in

[John S]

This is the first anniversary of my diagnosis by Dr. Villa-Forte. Since then I have had four treatments with Rituximab. The treatments have come in pairs. I've enjoyed remarkable recovery for 4-5 months after each pair of treatments. The last month is Hell.
Looking on the bright side, before the diagnosis, I was ready to die. I was tired of everything. The symptoms of massive headaches, sinus issues, hands covered with sores, body aches, eye aches, general malaise and depression were taking their toll on me.
In recovery, I have so many bright days. I've been able to play guitars , ukuleles and mandolins again. I've been able to sing again. I've been able to fly model airplanes again. I've taken my grand children to Disney World and had a great time. I've been able to give good advice to the fellow that bought my businesses.

My next RTX treatment is in 28 days and I am experiencing many of the symptoms again. Perhaps they are not as severe as they were originally but I have learned to fear them. I'm pretty sure that I can make it through the month because I have faith that I will feel better soon.

[Pete]

Hi John,

If you’re having symptoms again, I suggest you give Dr Villa Forte a call. She may want to get your next rtx sooner than planned and prevent worsening of symptoms and disease damage. I think treating our disease effectively includes some gut hunches as well as prescribed treatments. There is no one size fits all treatment for the disease.

Good luck!!

[gilders]

Hi John.
It's good to hear that RTX has worked well for you, albeit not lasting as long as you'd like. I've build and raced (for fun) a few model cars, but planes sound like a lot of fun (and skill).
I'm hopeful to return to the US and maybe revisit Disney World sometime after my kidney transplant.

[NatriceRomeo]

This is the first anniversary of my diagnosis by Dr. Villa-Forte. Since then I have had four treatments with Rituximab. The treatments have come in pairs. I've enjoyed remarkable recovery for 4-5 months after each pair of treatments. The last month is Hell.
Looking on the bright side, before the diagnosis, I was ready to die. I was tired of everything. The symptoms of massive headaches, sinus issues, hands covered with sores, body aches, eye aches, general malaise and depression were taking their toll on me.
In recovery, I have so many bright days. I've been able to play guitars , ukuleles and mandolins again. I've been able to sing again. I've been able to fly model airplanes again. I've taken my grand children to Disney World and had a great time. I've been able to give good advice to the fellow that bought my businesses.

My next RTX treatment is in 28 days and I am experiencing many of the symptoms again. Perhaps they are not as severe as they were originally but I have learned to fear them. I'm pretty sure that I can make it through the month because I have faith that I will feel better soon.

I too experience symptoms about 6-8 weeks out from infusion time. I usually need to go up on prednisone. Since I have been on rituxin i have been unsuccessful in totally tapering off the steroids. I’m trying a strict anti inflammatory diet to see if this helps. Can’t hurt any thing I guess.


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[John S]

I had a blood test yesterday and my SE rate is down. Last month it was 19 and this month 14. It's strange that my symptoms are flaring while the SED marker is decreasing. I knw I'll feel better soon.

[Jaha]

I'm glad that you have been able to live a fairly normal life after treatments. I'm wishing you all the best with your next Rtx infusions.
Do you have your txs at CC? I am asking because, I will be having my 21st infusion there on the 27th of this month. Best wishes for further improvement.

[drz]

I had a blood test yesterday and my SE rate is down. Last month it was 19 and this month 14. It's strange that my symptoms are flaring while the SED marker is decreasing. I knw I'll feel better soon.

SED rates involve manual procedures and are not automated like most other lab tests so there can be errors if the test is not processed correctly. My local lab only does it right about 25% of the time and they never had it done right for a couple years until i brought it to their attention. I knew it was wrong cause i often had same labs done at Mayo and another large hospital where results were always normal as was the short term measure of inflammation CRP.

[John S]

I'm glad that you have been able to live a fairly normal life after treatments. I'm wishing you all the best with your next Rtx infusions.
Do you have your txs at CC? I am asking because, I will be having my 21st infusion there on the 27th of this month. Best wishes for further improvement.


Yes, I drive to Cleveland for treatments. I spoke with Dr. Villa-Forte yesterday. She advised me to take 10 mg Prednisone in the meantime.

[Alysia]

I cant make it more then 6 months without rtx. At the edges of the 6 months' period my wg becomes more active. I was once late in 6 weeks and got episcleritis (wg in my eyes) so I now set the dates for rtx infusions exactly every 6 months. I know weggies who get rtx every 4 months.
Hang in there John, sending prayers.

[John S]

There was a cancellation in the chair for Friday so I was able to get a treatment. On the way home, we stopped in Celina, OH at the Pullman Restaurant. They make pies there every morning. We called ahead and ordered 3 coconut cream pies and one banana cream pie. We drove them back to Chicago and distributed all but one to grateful family and friends.
If you're going to get sick and need treatment, have dessert.

[Pete]

Life is short. Eat dessert first. Those pies look awesome!!!

[John S]

Delicious. I recommend them to all patients. I'm not sure that Medicare will cover them but mileage should be tax deductible as they are a true medical expense.

[John S]

I'm heading to Cleveland for another RTX treatment. That should take care of the Wegie Monster for another 5-6 months.

[John S]

I had the second treatment for this round on Tuesday. Dr. ila-Forte explained why the treatments come in pairs but I'm still not sure I understand. Whenever I go to the Cleveand Clinic, I stay at the Intercontinental Suites. For some reason, I can't sleep the at all after getting the treatment and sit up till 4 or 5 in the morning while my wife sleeps i the bedroom.
Besides sleeplessness, My left arm and shoulder ache terribly the night of treatment. Does anyone else experience this phenomenon?

[Pete]

Hi John,

The sleeplessness probably results from the high dose of steroids before the rtx. I don’t know about the other symptoms.

When I stay overnight for a treatment, I stay at the Holiday Inn Cleveland Clinic. It’s nice and was much cheaper than the Intercontinental. It offers free shuttle service to the Clinic sites.

[John S]

I had a Rituximab infusion yesterday and couldn't sleep again last night. They must pack some Prednisone or similar in the drug. I noticed that my blood sugar shot up too despite the fact that I had not eaten much. Drove back from Cleveland to Chicago today and hope to R&R tomorrow so that I feel I balance again.
I'll be back in Cleveland for another infusion in two weeks but Dr. Villa Forte told me in at the rate I'm going the next round will only have one treatment.

[Pete]

I had a Rituximab infusion yesterday and couldn't sleep again last night. They must pack some Prednisone or similar in the drug. I noticed that my blood sugar shot up too despite the fact that I had not eaten much. Drove back from Cleveland to Chicago today and hope to R&R tomorrow so that I feel I balance again.
I'll be back in Cleveland for another infusion in two weeks but Dr. Villa Forte told me in at the rate I'm going the next round will only have one treatment.

What is the date of your next rtx? I’ll be at CC on 10/30 for mine.

And yes, you get a dose of steroids with rtx along with Benadryl. I am generally wakeful the night following the infusion and a little tired the next.

[John S]

What is the date of your next rtx? I’ll be at CC on 10/30 for mine.

And yes, you get a dose of steroids with rtx along with Benadryl. I am generally wakeful the night following the infusion and a little tired the next.


10/23 I get my next jolt