1 Week Post Prednisone

The week on prednisone was great. As the dosage was decreased, I noticed the return of some minor pain but things were still pretty good. It's now been a week and a day since I took the final dose and I'm doing not too badly. If my pain was at a 10 before prednisone then I went to about a 1 as soon as I started it. I'd say I'm now alternating between a 3 and a 4, depending on the day and I can live with that. Trouble is I realized that being at 1 was a possibility and I wouldn't mind going there again. But at what price? Prednisone taken on a long term basis can be pretty nasty so if there's an alternative I like to know.

I tried to call my rheumatologist last week to discuss the future but she was on holidays and will be back this coming Monday. I'll call her then to see if I can get in to talk to her.

Did I Mention I also have RA?

It just occurred to me that I may never have pointed out anywhere on here that I have rheumatoid arthritis as well as scleroderma. The reason I haven't mentioned it is that it had pretty much gone into remission. When I started having more pain about a year ago I put it down to scleroderma but am now convinced that the RA has returned. I bring this up now because of the prednisone which is not normally used for scleroderma and should, in fact, be avoided as it can cause renal failure but since I have no apparent renal involvement I guess I'm okay to take it.

Anyway, I am happy to report that the prednisone is doing its job and that I am virtually pain free. This is now day three and I feel great, have been sleeping better than I have in months, and when I finish with this blog entry, I am going to grab my guitar and give it a whirl. Yeehaw, life is good again.

Prednisone

Well, the title says it all. I phoned my doctor's office this past Monday and they got back to me today. Dr. Pope wants me to go on Prednisone. Can't say I'm very happy about it but then if it will help I'm about ready to try anything right now.

The dosage will be 20 mg for two days, 15 mg for the next two, then 10, then 5 and that's it. I started this afternoon and after about three hours started feeling better - less pain. It's now 6 hours later and I notice a significant difference in the pain level. I feel very mild nausea but not enough to really bother me. A pretty good trade off I'd say.

So, we'll see what the next few days bring but I am encouraged by the quick results.

August Already!

It's hard to believe that July has come and gone as has the first week of August. I wish I could say that it's been a great summer but GI issues and pain have put a damper on things.

There have been two occasions in the last couple of weeks when I've had to stop my feed due to nausea. One, I'm reasonably sure, was due to something I ate so it's my own fault. I really don't like to skip feeds 'cause I lose weight so easily and then have to fight like hell to get it back. I'm still about 100 pounds, dressed, so the consequences haven't been too severe. I'm hoping it's just a temporary thing and that I can get back on track which, at present, is still four bags of Vital HN per day.

And then there's the pain. It's been going on for a year now but is progressively worsening despite taking Arthrotec, and Celebrex before that. A week ago I forgot to order my Arthrotec so had to go one night without it and at least I know now that it works because it was a terrible night with extreme pain and virtually no sleep. But it's just not enough. My rheumatologist has been on holidays but will be back on Monday so I will be calling to see if I can get an appointment to adjust my meds. As an indication of how bad the pain is, I have spent about an hour on the guitar, in total, all summer. When I was feeling well, it wasn't unusual for me to spend two hours or more a day, every day. But now after fifteen minutes, when I'm just getting warmed up, I have to stop due to the pain. So, something has to be done 'cause I derived a great deal of pleasure from playing. My other hobby, photography, is also suffering.

Well, enough said. I really don't like to gripe here but I also want to present a realistic picture of what it's like living with scleroderma so I hope you, dear reader, will forgive me this little rant and hopefully my rheumatologist will have some answers for me when I see her.