Steroid dependent.

I think I am!!!

Just finished my second course of pred since November last week. One week later and flaring again. Urgency and frequency gone from 2-3 a day to 10 plus a day in less than a week.

So disappointed and fed up and frustrated!

Got a colonoscopy on the 26th May. So wish it as like tomorrow so I can find out extent and get something done about it.

I am taking 3g of salofalk granules and 2g salofalk enemas and have just stared asacol suppositories but am unable to hold the suppositories for very long.

I feel so frustrated because my consultant is very unsure about azathioprine and biologicals due to my WBC always being around 3 but sometimes being as low as 0.7 and also I have had a malignant melanoma 3 years ago and also have a neuropathy.

I feel like I need to have a fight with my consultant to get something sorted. I have had loads of tests in haemotology and they say that I can have gcsf injections to stimulate my bone marrow if I need aza but my GI says he is concerned about the side effects ( don't know if he mean the aza or the GCSF)

I need a plan.

Is it unreasonable to ask for more steroids until at least they decide what they are going to do with me?

The other thing that has annoyed me is that I had an appointment with my GI in july and it was then cancelled and put to 2nd August then I got a letter yesterday saying that one had been cancelled and no new one made.

Seriously thinking I need a second opinion.

To be able to get through the next few days in my teaching job do you think it would be safe to take immodium or codeine. What are the chances of getting megacolon. My last scope showed inflammation to distal descending colon. Just one little tablet will stop me going for the day.

Hate this disease!!!!!!!!!!

Post Edited (Mad Martha) : 5/15/2016 8:21:49 AM (GMT-6)

Thanks ipoop. The problem with the biologicals is the risk of getting another melanoma. I have no information on that. The ibd nurse said it was out of the question because of that. But that's only a nurse and not my consultant. He is only part time and I never seem to be able to see him.

I am sorry to hear it. I don't think it's unreasonable to ask for more steroids, maybe you can even try Uceris instead of prednisone, but it's just a band aid. You should definitely try seeing another GI. Maybe there are some trials you can look into. Let's be serious, almost all of the meds have some impact on immunity, and with the low WBC, it is scary. I always had my count hanging around 4 and it would drop really low on 6mp. It's very dangerous. There was a point where they sent me a list of foods I shouldn't eat and things I shouldn't do because my WBC was so low. I ended up with no response to biologics, but they did put me in the hospital with a nearly incurable "bug". Entyvio could be the least problematic of the biologics, but it didn't do anything for me at all. Entyvio also has the warning for infections on their patient information.

Have you had stool tests? How about antibiotics? VSL? You're going to have to think out of the box if you can't tolerate the majority of the drugs. How about bentyl for some immediate relief?I never took Imodium but my GI gave me the OK to take it and I think my UC was throughout. You should probably get the okay just so you can set your mind at ease.

I am so thankful I am done with UC.

Did you hear back? I get impatient too, but sometimes I jump the gun and I realize I probably could have waited. Hopefully you start feeling better.

Mad Martha said...
The problem with the biologicals is the risk of getting another melanoma. I have no information on that. The ibd nurse said it was out of the question because of that. But that's only a nurse and not my consultant. He is only part time and I never seem to be able to see him.

Don't be surprised if your consultant says the same thing; most doctors would be quite reluctant to prescribe an anti-TNF to anyone with a personal history of melanoma. Those patients are usually excluded from clinical studies as well (although family histories of melanoma are sometimes acceptable).

This is from a database of 13,970 RA patients enrolled in the British Society of Rheumatology Biologics Registry (BSRBR).

"Biologics & Prior Malignancy
•Although no overall increase in cancer risk was seen in the BSRBR, the recurrence of melanoma differed between the two groups.
•Of the 17 TNFi-treated patients with prior melanoma, 3 developed recurrent melanoma (2 metastatic); in contrast, none of the 10 non-biologic DMARD-treated patients with prior melanoma experienced a recurrence"

"In whom should we exercise caution?
•Melanoma and non-melanoma skin cancer (NMSC) have been reported to occur more commonly among patients with RA, especially in those receiving TNFi
•Consequently, the PI for each TNFi now states that periodic skin examinations should be considered for patients at increased risk for skin cancer"

Source: /www.acoi.org/2012Convention/JBrackney.pdf

iPoop said...
It seems the worry with patients who've previously had cancers, is that there's increased risk that they'll reactivate once the immune system is suppressed. It's kind of like having either dormant hep c or tuberculosis infections, adding biologics results in those no longer latent illnesses coming to the forefront.

That's basically how my rheumatologist explained it to me when we discussed TNF blockers. I'm sure that if a patient was passionate about trying one and had failed everything else, they could find a sympathetic doctor willing to help. This would likely involve a stipulation that the patient's skin be closely monitored. Even then, your insurance company might decide it's not worth the risk.