How did you feel during your first treatment?

[Luce]

Hi and welcome to our little group.

I've never really felt ill since being diagnosed - it only took me about six weeks from feeling like I had bad flu, to be coughing up blood and being admitted to hospital. I was diagnosed two days later and started immediately on IV cyclo and pred, as well as plasma exchange to treat lug and kidney involvement. Within days I felt so much better and the only symptoms that I've noticed since is always being tired and joint pain when flaring. I was back at work full time 3 months after leaving the hospital but am still not near remission, although like everyone else I have found a 'new normal' and get by just fine day to day.
I was given Fosamax at first when on high doses of pred but was taken off it as apparently it can damage your fertility. I have not been offered any calcium or vitamin D supplements as at 26 years old my doctors think its not really necessary. I do get bone scans from time to time though to make sure the pred isn't starting to do damage.

[katarzena]

Thank you all for replying.
Luce - so you weren't offered any supplements because of your young age? Maybe that is the case with me too, but I think I'll still ask my doctor about it and see what happens. Extra calcium and vitamin D can't do any harm I guess!

[Doug]

Katarzena ~ you never have to feel stupid or pushy because you ask questions. Tell your mother docotrs save time when they deal with patients who understand medical jargon, the nature of their disease, and the fine points of treating that disease. I find they also tend to tell you more details about how you are doing because they know you probably will undertstand what they tell you. I am encouraged by your attitude and your willingness to increase your knowledge of WG. You will benefit in the long run.

[JanW]

Certainly the calcium or Vit D (which a lot of doctors are advising now as very frequntly people are low in it) can be beneficial. Understand that this is quite different from fosamax, which is used to stop bone loss when you already have osteoperosis, like I do. Fosamax can also be a difficult drug to take (you have to take it on an empty stomach, first thing in the morning, you can become nauseated), and it hasn't been proven conclusively effective for people who have osteopenia (the precursor to osteoperosis) although some docs still use it for that.

And Doug is absolutely right -- the more you seem to know the more the doc will tell you. Sounds counterintuitive, but there it is.

[Sangye]

Katarzena and Luce-- you should both be taking calcium and vitamin D supplements, even though you're young.

[DuaneHart]

My docs put me on vitamin d and calcium as soon as I started the pred a year ago. I had a bone density test about 3 months ago and it did show that I am showing some bone loss since the first test I had. I think, personally, that it is very important to be on vitamin D and Calcium. THe prednisone not only causes bone loss but also weakens the tendons and ligamints. I was on pred about 15 years ago for Crohn's Disease and Ulcerative Colitis for a year and a half. I slipped on some ice and totally severed every tendon and ligamint in my left shoulder. The surgeons said that the tendons/ligamints should be the consistancy of canvas and mine were closer to wet tissue! Now, that I'm on pred again for the last year, my knees have been giving me problems--tore the right miniscus just from walking and it twisted wrong so am now waiting to get that repaired. I'm learning to take my time when doing stairs, walking, everything.

[MCC]

I have felt really well ever since I started the medication...within 3 days after initially feeling sick and having severe heartburn I felt completely well, it was incredible actually after having such pain in my knees.
I haven't had too bad side effects from prednisone really- bit of a moon face, some weight gain, a cut on my foot didn't heal for ages and I had to take antibiotics so now have a nice scar, and I strained the bottom of my foot after walking too much.

I take a calcium tablet with vitamin D in it ( I asked about Vitamin D on here the other day then noticed my calcium tablet already had it). I'm also on fosamax but I think I will ask my doctor to come off it as reading about jaw necrosis etc really worries me!

[JanW]

The thing about jaw necrosis and fosamax that you really have to understand, according to my rheumy, is that these conditions tend to happen in a situation where dental concerns are already being neglected. That's why your doctor SHOULD ask about what kind of dental work you've had done and what problems you've had prior to prescribing it. You also need to tell your dentist that you are on it. If you get a dental infection while on it, you have to treat it prompty and thoroughly. The other thing your doc should be doing is checking your urine while on it, to see how much of it your body is sloughly off and how much is getting into your bloodstream -- these drugs are extremely poorly absorbed, which is why you can't eat or drink anything around them, and the insert suggests avoiding talking other medicines until much later in the day.

[Sangye]

Jan, that isn't always the case with fosamax. The link to jaw necrosis is quite strong--with or without pre-existing dental problems. In my experience MDs are really downplaying the risks of these drugs (bisphosphonates) while overselling their potential to help. I wouldn't be surprised if they're taken off the market someday. If jaw necrosis does develop, it is nearly impossible to treat and subsequent infections become a huge additional problem. Surgeries are often disfiguring. Unless someone is already osteoporotic and no other option remains, the use of bisphosponates is very controversial.

[elephant]

My Rhuemy wants me on it and I stopped taking it in August 09. I keep telling her I will take it, she said that the prednisone will cause my bone cells to die...so ten years from now I am high risk of breaking my bones....so that's why she wants me on Boniva. I am not interested in taking since I had 4 sinus surgeries, root canal and still sinus issues.