After being diagnosed I immediately got scheduled for in-patient IV Solumedrol 1g per day for three days. In the hospital they gave me .25g every six hours – I assume they did it at this rate to make sure I didn’t have any ill effects. The hospital was quite busy and I had trouble getting admitted so finally they just admitted me through the ER – so I spent the first night there. The next day I was moved to a very nice private room so no complaints there. It was boring being in the hospital but we snuck out a couple of times to get some food – although the food at this hospital was very good. I was told it could take a week or so to see the effects of this treatment but quite upsetting at the time since this treatment had no effect. My fear at the time was that I was going to be like this for the rest of my life – while it could have been a possibility it did get better. The other thing I found very upsetting was my vision getting very bad – I am naturally near sighted but it got much worse. In fact I could not functionally make anything out beyond 20 feet because it was too blurry. I thought this was more symptoms of this exacerbation since I was not warned by the doctor but is just turned out to be the Solumedrol. The blurry vision happened every time and seemed to peak a few days after my final dose and then took over a week after that to completely get better. I could not drive for a good portion of this because my vision was too blurry and would be too dangerous. The other symptom that I had this time was what they call a metallic taste in the mouth – I didn’t think it tasted like that but really have nothing else to describe it – this happened with every treatment of Solumedrol. Almost all food and beverages (especially water, Dr. Pepper, and Ketchup) tasted really bad (no wonder I lost weight) I did find that Sunkist Orange tasted OK so I switched to primarily drinking that for a while.
Since the first treatment “failed” and the dr. said that it can take a number of treatments to get the body into remission the next month I was scheduled for another 3g of Solumedrol. This time I got to get it at home by a home health nurse since I tolerated the first infusion so well. For the infusion at home they infused the days 1g all at once over an hour. The nurses were very nice and the infusion went very well. They offered to leave the IV line in constantly so I didn’t have to be re-stuck each day but I figured that the line would clog up and would need to be replaced anyway – plus injections don’t bother me that much. The good thing about this treatment was that I got to do it at night so I could continue to work and not use any more of my rapidly diminishing sick time. This time I got the normal symptoms of the steroid of blurry vision and a bad taste in my mouth but I also added the symptom of being very irritable. Almost everything really ticked me off – in fact almost every situation was a no-win situation for everyone. I felt the most remorse for my wife who ended up taking the brunt of all of my angst – fortunately for me she is exceptionally sweet and bore my irritability very well. The bad part again was the this treatment didn’t help with the symptoms at all. The dr. said that I was going to get 3 months of steroids (4 months total) to see if this would resolve. If it didn’t than I’d probably need to go and see Dr. Froman for chemotherapy. Fortunately it did not come to that.
I started Rebif right before my 3rd treatment of Solumedrol. It was this treatment that I started to feel a lot better. I credit that in large part to me having started taking Rebif. (Of course they say it can take a year for Rebif to start to work so maybe it was just having taken enough steroids) I was even more irritable this time but once again my wife took excellent care of me.
At first I did not think I needed my last dose but I got a little worse before this dose so it was very much welcomed. Afterwards I was really back to myself as far as all of my functions. The irritability this time was still bad but not as bad as it was the previous time – go figure. Hopefully I will never have to take Solumedrol again.