Does anyone else feel like a guinea pig?

[borderholic]

Was on remicade for 6years with good results. Then two infusions were given to fast and became real sick. I Switched Dr's and was placed on Humira. After 3 years seemed to be ok but not great. Last year after a colonoscopy they thought I had a stricture. It was a cancerous tumor.

I wanted to know if the Humira caused the cancer or was it the Crohns. If it was the Crohns, then why should I still be taking Humira if I still got cancer?

I was seeing a Onocologist every 3 months to check CEA levels. I was told we didn't want to go above 3.0. For the first 6 months I was below 2.5. the last blood test came back as 3.8. I was re-tested the next day and it was 3.2. the Dr said we can go to every 6 months now. I questioned the fact that we were over 3.0, so why are we waiting every 6 months instead of continuing on the current treatment of every 3 months. He said this was normal and not to worry.

I had a routine blood test, and came back positive for lupus. went to a Rumatologist and the Dr. believes I am getting Lupus from the Humira. She is recommending I take methotrexate along with the Humira because I have been getting bad skin rashes from the Humira. She also mentioned that x-rays she ordered showed that I have arthritis in my back caused by Crohns.

I really have a bad feeling they are all just guessing. Because I had cancer less than a year ago they still want me to continue the Humira. The Dr's said there is nothing that can be done about the arthritis but hopefully with the cocktail of Humira and Methotrexate my skin will clear up and the arthritis won't spread much more. My back has been killing me the last 3 years and nobody seems to have any idea what can be done about the arthritis.

I have had problems with Kidney Stones since I was in my 20's. I have had 12 lithotripsy's in the past 20 years. A few Dr's have suggested that the Crohn's is causing the kidney stones.

Have other people gone through or are going through the same guessing game? Every time I take a blood test there is always some new thing that has to be investigated.

I wanted to take Aleve for the arthritis but was told I can't because of the Crohn's. Nobody has suggested anything else.

sometimes I feel as if I am going crazy. They agree and confirm I have these problems but there just isn't anything that can be done about it.

 

[theOcean]

I know a number of people are going through the guessing game process, so you're definitely not alone in that. It takes awhile to figure out which medications work, and then which medications or health condition might be causing what. The best you can really do is try and work together with your health team to try and figure it out. They want to help you, I promise.

Any of the options you mentioned could have caused the tumor. You're more prone to colorectal cancer as a result of having Crohn's, and being on Remicade and Humira means your immune system is weakened so your chances of developing cancer are higher as a result. However, if you were in flare with Crohn's even without those medications, your system could have been compromised by that, as well.

Humira-induced lupus is a known risk with Humira, so that's likely right. I know there's a few members of the forum with this. I can try looking through the history if you'd like, but you can also check out the Humira section of our forum and ask about if anyone else has encountered it there.

I can see why you'd be concerned about continuing on Humira after your experience with cancer, but Humira and methotrexate are both used to treat forms of arthritis and eczema/psiorasis. Are you getting regular blood tests while on these medications?

I know Aleve can help for arthritis -- my grandmother has it -- but it's definitely not safe for your Crohn's. Taking too much naproxen sodium was what sent me into flare-up for over a year, and landed me in the hospital three times as a result. My grandmother, who also has IBS, can't tolerate it either. You just have to hope your other medication will help.

I'm sorry to hear you've gone through such a tough time through this illness. But at least know that you're not alone in it. I'm sure there's many members of this community that would agree.

 

[borderholic]

Thank you for your response. I guess the problem seems to be that the doctors really aren't talking between each other. I know that is not uncommon they have huge patient loads.

I've seem that a majority of people who take Methotrexate are taking Folic Acid as well. I contacted the Dr's and they didn't seem to think I needed it.

Then of course my Primary wants to know why I wasn't re-tested to check my CEA level. She has just ordered more labs and included a CEA screen.

Normally I just do what the Dr's tell me. But the skin condition is getting worse. I won't wear shorts during the summer so I don't have to contend with people staring. Now it has spread to my arms. I have my own business and always come in contact with clients. I don't think I can wear jeans and a long sleeve shirt all summer long. I mentioned this to my Gastro several times and he never made anything of it. Then when the Rhumatologist got involved his office called me and wanted to know how long was I having this skin condition.

It's frustrating dealing with all the Dr's and each one is asking me why the other isn't doing something or not doing something....

I guess I am glad to know that I am not the only one going through this, but I am sorry that people do have to deal with this. I am sure I am not alone when all you want to hear is "we can cure this". It's seems that the best you can hope for is a band aid and that the band aid doesn't cause you more harm than the actual disease.

 

[shamrock15]

I do know what you are talking about. I think my previous "crohn's specialist" did the exact same thing. Note that I said "previous". I was not impressed. You do need to learn to ask a lot of questions from all of your docs, keep your information together, and hope that your docs don't take too much offence to the questions.

Aside from that, I actually was a guinea pig when they were doing the budesonide trials. I tested it, didn't work for me due to skip lesions. Interesting experience.

 

[KayleighMeek]

Your dr is saying you don't need folic acid whilst on methotrexate but I think that isn't right. I used to take methotrexate and had 10mg folic acid weekly to help keep side effects at bay, it really helped with sickness that methotrexate caused. I would contact your dr again or a different dr to get another opinion.
I found that methotrexate did help with arthritis for a while but I have now moved onto cimzia and whilst my bowel issues aren't completely under control the joint pain is much more bearable. I have also just started having bad skin reactions on my face and hands it becomes very red, itchy and painfull. The dermatologist didn't really give me much information but sent me away with a few different creams to try.