Just an update after my CC visits

[Jaha]

I went to CC on 3/30 and seen 3 specialists, had an endoscopy and a whole bunch of lab work. The first up was the Gastroenterologist, she had a very good approach to my stomach issues. She thinks that the pain I have in the upper left abdomen is nerve damage from the lung resection I had before dx's and from the shingles that I have had. She referred me to an anesthesiologist for a nerve block. She also did the scope and found that I have 20-50 polyps in my stomach ranging from 2-15mm. She did biopsies and got back with me, that they were benign and they were caused from taking stomach medicines for GERD. They are called Fundic gland polyps.
The second one up was a Neurologist. She happen to be head of that dept. and was a good friend of my Rheumy. She ordered numerous blood tests and wants to do an MRI of my brain to check for another auto-immune disorder. She thinks the neuropathy is from Wegs, but is concerned that something else is making me clumsy on my left side and is causing my eye to drupe and numbness in my face. The labs she ordered all came back good except for sed rate being slightly high. She also put me on new meds, I am to try Cybalta and, Gabapentin for pain. So we will schedule the MRI and follow up with that.
The last one up was my Rheumy, we decided to take me off Cellcept and to try to use Rtx only, with the preds for now. I am waiting for the scheduling of the Rtx for this month.
It seemed that I had a lot taken care of in 2days in Cleveland and am ok with these plans. I think I will feel a lot better off of Cellcept, I do think that it builds up in your system. I hope to be on my way to true remission.

[Pete]

Sounds like everyone on your treatment team is on the same page. Hope they can get you where you need to be.

[Debbie C]

Wow Jana ,they put you through the a lot up there.Can I ask what medicine you were taking for gerd ? I take 20 mg of protonix a day and I have also started ,in the last month been taking a extra strength probiotic because when I had my last endoscopy done he noticed I had candida on my esopogus (sp?) But you have a lot of poylps !!!! What are they giving you for that ? I hope the nerve block helps with your pain. Do you think you may of had a minor stroke to cause the other issues ? I had an mri of my brain done years ago and foung that I had an infartic stroke ad about 5 tias but I never had side effects from it. Hope all turns out well for you.Are you getting the tests and the rtx done in where you live or back at CC ? Glad you are getting off cellcept too. Take care of yourself

[drz]

I was also concerned when I read about the polyps from GERD meds as I have taken 40 MG of Protonix twice a day for many years. I had problems when they tried to cut it back to once a day.

I remember taking Gabetin years ago for neuropathy and it interfered with my balance and made me clumsy so I walked into lot of walls. I gave it up as the neuropathy got worse so numbness generally replaced the pain sensations. Good luck with your treatment.

[Jaha]

The stomach medication that I have been on for about 6 years is Omeprazole 20mg twice a day and I also have eaten tums like crazy at times. I asked my PCP about what to take along with that to get rid of the polyps, she didn't know. The gastro doc really didn't tell me how I rid myself of these. She also stretched my esophagus, because I was having trouble swallowing even water at times. They did tell me to eat small meals and bland ones, also take Mylanta when needed. I hope when I go back for my recheck and nerve block, we can discuss this further. I have a really bad family history of cancers, my dad had 3 different kinds, he passed at 65, both grandmothers passed from cancer, one with breast and colon cancer at 58 and the other had stomach cancer and passed at 62. The Neurologist told me I had some really bad genes, I was already aware of that. Deb there were times when I was on Cellcept that I felt like,I was slowly having a stroke, it could be a possibility. I now have to try an coordinate having all these things done and get in my infusions that are due this month. Trying not to break the bank by having to many trips to CC. I'm trying to feel good for my Nephews wedding in the Smokie's at the end of May. That will be only, the second get away we have had in the last 5 years Thank you all for your kind thoughts and words. Deb, I hope you are doing well for your trip to Florida. I will keep you all up to date on my txs.

[Debbie C]

Hey Jana,my mom takes 20mg of Omeprazole also but only 1 a day. I used to take that also,then went to Nexium,then prilesec now on Protonix.I have been on that for a little over a year.Sorry to hear about all the cancer history in your family.Thats odd that they didn't tell you what to do for all the polyps you have. I never heard of having your esophagus stretched,,,has it helped ? Are you having 4 infusions.That will bring you to the end of May. I hope you are feeling well enough for the trip. Yea ,I can't wait to go to Florida and get out of this cold. I cant believe we are going to be in the 40's again this week.No wonder my Christmas cactus is STILL blooming!

[BookNut]

Glad to hear you had such a good, and efficient visit with CC. Hope you live nearby to make follow ups easy.

[Jaha]

I think the stretching has help, I don't seem to choke when I eat. I will do the 2 infusions, even though the doc mentioned doing 4, I just want to get it over with. I think I going to go ahead and get the nerve block also, before I go on my trip. I am going to wait on the neurology stuff until in June. If the polyps grow I would imagine they will want to take them out. The gastro doc will probably want to do a colonoscopy next on me,( I'm just guessing). Is your Christmas cactus blooming red? This weather is really been hard on us. The Florida trip sounds wonderful, where in Florida are you going?

[jvilner]

I'm going for a dilation of the esophagus next month. What can I expect afterwards. Have problems swallowing and can't take pills. Is this WG related?

[Jaha]

I am not sure if it is a WG thing or not, I guess if they plan on doing a biopsy they can tell you. It was an easy procedure for me, as a matter of fact I was still awake when they did it. They do give you the twilight drug and something like adivan or valium. I'm just a hard one to knock out, so don't worry you will not know it happened to you. You may have a bit of a sore throat for a couple days and feel a bit drousey for the rest of the day. You will be feeling better and swallowing your pills better right away. Best wishes to you and let us know how you get along with it. Take care