How did you feel during your first treatment?

[katarzena]

I've been reading some posts on forums about people talking about not being able to walk, climb stairs, go to work etc.. How did you feel when you were diagnosed bust started on medicines?
I don't know how to explain it but I never felt ill. Before I was diagnosed my problem were nose bleeds and some joint pain. As soon as I started prednisone I felt fine. No pain at all, I do physical education, go to gym with no pain. My prednisone was really fast tapered down (maybe too fast) tapered about 16mg first month, 8 next, and now I'm on 12 mg, next week starting 8. Is that too fast? Never felt any difference in how I feel the day after I took 16mg less then the day before.

[elephant]

Katarzena, once you hit prednisone 10 mg, it really should be tapered down by 1 mg per month. Two years ago I was tapered too fast, at that time did not have a Wegeners Specialist. My Wegeners disease got worse ( big lung nodule, very tired, joint pain..) , so ask your doctor if you could take it slow.
Katarzena, I really think you are going to do great. Since you have no lung and kidney involvement, you are very lucky that is was caught early. All you have to do is be aware of the wegeners symptoms and don't put yourself in denial. If you keep on top of this disease you will fine.

[Sangye]

I think the reason you didn't feel ill is because the Wegs was just getting started. I didn't feel ill for many months either--just had joint pain that got worse and worse. It was pretty horrific joint pain, but I felt fine otherwise. By the time I was diagnosed I was almost dead and did feel seriously ill. I had immediate major complications so I felt much worse after starting treatment. The joint pain went away for a few months, but everything else went downhill.

That's how Wegs is-- highly variable from one person to the next.

[katarzena]

Thank you for replying elephant and sangye :)
I agree with you about tapering down too fast. I'm so grateful that I have found this forum and learned so much more about my disease. After I hit 8 mg I will taper down slowlier. My doctor truly is an amazing woman and I do really like her but I will taper slowlier, it can't do any harm right? I cannot tapper 1mg per month because of the form of the pill (there's no possible way to cut the pill and get 1mg since prednisone in croatia exist in form of 8mg) but I will try to taper 2mg per month.
Thank you for saying I will do fine and I truly do feel lucky as much as lucky a person can be with this disease. Since I was diagnosed I told myself that this disease is not going to get me. I find myself being lucky to get this and live with it rather then get something even worse (and there are so many worse diseases then this one) I've told myself that the medicinies WILL work and that I will reach a long term remission. I truly do believe in that and I think everyone should think the same way. I am aware of flare ups and if it does happen I will accept it with a smile on my face and beat it up once again. That's what keeps me going :)
I was wondering about something else too. My doctor never gave me calcium, magnesium or D vitamin. I wonder why? I as thinking about 2 possibiites: maybe I haven't been so long on prednisone and she thinks it still isn't neccessary (I've been on it for 3 months now) or she's not even aware of osteoporosis (which I doubt.)
I will ask her about the vitamins next time too. My mom doesn't like me asking to much questions that's probably why I feel like I'm moaning too much and rather keep my mouth shout but seriously, I think I'm the first person that should take care of myself so why not? I'd rather be boring than get something later in life that could have been prevented.
Okay enough Katarzena :D I always overdo everything :D

[Sangye]

Moms are often right, but when it comes to your health in general and Wegs in particular, her advice to stop asking questions is completely wrong. If you don't have all the info you need Wegs can turn ugly, even deadly.

There must be a smaller dose of pred than 8 mg in Croatia. Many people would need to be on less. I think you should ask again. No matter what your mom says. :D

[katarzena]

Yes I agree. Maybe a form of 4 mg exist? I don't know. I've been told it doesn't (but not from my doctors mouth). Yes my mom is really like that, she thinks that the doctor will think I'm annoying and has to treat me for a long time, my mom has been through so much with my disease and diagnoses so I understand her. Sometimes it feels like everyone else around me is in worse shape then I am. :)
I have one question for you, were you given the calcium and d vitamin? And should I ask for it?

[JanW]

Hi, Katazena -- First off, great avatar! You're a beautiful young lady!

Second, the calcium and vit d relate to bone strength. Since you are on pred, you are at higher risk of developing osteoperosis (I have it just from taking pred for asthma, which turned out to be stenosis which needed to be fixed surgically anyway). I take both daily in addition to fosamex for the osteo.

[elephant]

Talk with your physician about the calcium and vitamin D. This is my opinion, I think you should be on Calcium and vitamin D supplement.

[DEE]

ive always taken calcium and vitamin D from starting with pred '
I also so learnt from Elephany Sangye and many more to ask as many question as you need as one day it might save your life to pass on some information to doctor treating you who does not have much knowledge of wg
i was a quiet as a mouse thought the doctor know everything not any more with the help from my family and the forum i look after me now
so if i dont understand i ask or find out and new to me if i dont agree i say so
opps in danger of becoming an apprentice NAG better stop now :)
DEE x
ps beening a nag not a bad thing have got me through some rough periods in the last three months THANKS TO ALL THE NAGS OUT THERE!!!!!!!!!!!!!!!!

[jola57]

Katarzena, taking vit D and calcium is because of the pred working away at your bones. You want to know that you are protected, so talk to your doc and find out, I am sure she wil be glad that you are involved in helping yourself and not just do blindly what she tells you. Ask about what is the lowest pill form of prednisone that is available to you and do go very slow in tapering. Even at this early stage of the disease you can get worse very fast if you don't watch it.

[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.

[JanW]

Sangye: I agree, and my doc agrees, that these drugs shouldn't be taken for osteopenia. But osteoperosis is another matter. I would uldn't take it if I were merely at risk of developing the disease.

[Sangye]

Yes, my point is that so many Weggies are placed on bisphosphonates when they start pred-- as if they're going to lose their bone mass overnight. Everyone should have a bone density scan when first diagnosed. If they are already in a danger zone, then they might want to consider the drugs. Personally, I'd suggest that people in that category consult with a naturopathic physician or a holistic physician highly skilled in clinical nutrition. There are holistic alternatives that might work quickly enough. Not always, but certainly worth a try.

[Natalie]

hello , have been on fosamax for 5 yrs and caltrate + D for the same time , I did a destity test , showed ostio so went on The fosamax , think 12 months later had another and it was gone, no sign of it , this drug is a pain to take . and There is a new study out that dentists cant pull teath out if you are being treated with Fosamax because It has been linked to a illness where the hole your tooth comes out of dosent heal and gets bigger and bigger , one lady lost her whole jaw . Sorry cant think of the name for it >> my doc thinks this is crap , It has only been reported in IV fosamax patiants but the warning has been put out for all fosamax uses . I have had plenty of teath pulled while under going fosamax treatment, and now they wont touch me , tell me I need to get them surgically removed which i CAN'T AFFORD :mad:
cranky natalie :P

[Sangye]

It's called "bisphosphonate-associated mandibular osteonecrosis." Jaw bone rot secondary to bisphosphonate use. The IV and oral forms are the same chemical.

[Natalie]

I wouldnt of been able to remember that name .

[elephant]

Sangye, just the word "ROT", give me the creepy crawlies!

[Sangye]

I know! But that's what it's called in layman's terms-- jawbone rot. Like something you'd find in a poorly tended garden.

[JanW]

The fact of the matter is that the evidence is pretty weak already that it can prevent osteopenia from becoming osteoperosis -- so without the side effects even you could just be taking a drug that is difficult for some to tolerate with no real reason to take it. These drugs were developed for osteoperosis and are incredibly poorly absorbed as it is -- my doc says at the most 20 percent absorbed and 80 percent excreted. There is absolutely no reason to start it without evidence of osteoperosis. With luck and years of taking it, you might be able to turn your osteoperosis into osteopenia. The doc can also explain to you how severe your case is -- mine spine and hips are many orders of magnitude worse than they should be for a woman my age, and even worse compared to others of my race. I'm at high risk of fracture so I have to take it.

The best things docs could do for our bones is use pred as judiciously as possible.

[MCC]

I'm a bit freaked out these posts about Fosamax. I did read about the jaw rot before but my doctor says he doesn't think it's a big risk...and the nurses were very impressed he had thought to give it to me as it was purely preventative- I haven't had any bone density scans!

I think I will talk to him again about stopping it.

[JanW]

First things first -- get a bone density scan. My doc ordered one before I even had a WG diagnosis -- it should be standard protocol. They are also cheap and easy -- insurance doesn't push back.

Then, treat what's there, not what may develop (although with pred it's probably more like what will develop. I was never on it at the doses most of you are on, and never for even 10 days at a time and my bones are totally wrecked). It has not been proven as a preventative. Whether the risk of jaw rot across all populations is equal I can't say but I know a lot of people have difficulty even taking this med (I have not) and that would be reason enough not to take it if it hasn't been proven to work!

[Sangye]

I agree with Jan. The research supporting its use is pretty shaky. My first docs never even considered it for me, thank goodness. I was well aware of the risks back then and we would have had a huge fight over it.

My Wegs doc at JHU has never even mentioned it even though I was on high dose pred for 8 months and on Lovenox (injectible heparin) for 2.5 years, which really causes bone loss. He's very conservative when it comes to drugs and always has the long-term effects in mind when treating Weggies. I think the only drug he prescribes without any hesitation is lasix (furosemide)-- a diuretic.

[Lightwarrior]

When I thought back, my back aches started two weeks after my rheumy put me on Fossmax. I talked to my other docs and I stopped taking it two weeks ago. I have NO backpain, I have more energy. I have also gone from 30 to 25mg now of prednisone so that could factor in.

[SebastianCRO]

U have prednisone in Croatia(I use Decortine) in 5mg(green back) or 20mg packages(orange back)
(the 20 u can divide in 4 smaller pcs,a the 5mg u can brake in half)

And about the supplements u have very good stuff in the better pharmacy's(Ill pm u the name tomorrow)
mostly its from the states and cost about 25 USD, 20€ or 120 KN
it last me for about a month.

[Sangye]

Lightwarrior-- that's incredible about the back pain and fosamax. It's actually listed (http://www.drugs.com/fosamax.html) as a common side effect (I just looked it up--didn't know that).

I also read that osteonecrosis of the jaw is more likely in people who are anemic, as many of us are. Fosamax is generally a problem in people with vitamin D deficiency, low blood calcium or kidney disease-- all common in Weggies.

[jola57]

Sebastian, so no 1mg at all? Must be very hard when tapering. All candadian preds are white

[SebastianCRO]

I had contact only with the 5mg and 20mg..
Next week I am going to the pharmacy I will ask if theres a smaller dosage.

The pills are white,but the back side of the "tablet" or package is in different colors :D
( if u wanna I can take a picture for U ;) )

[jola57]

Ours are not prepackaged but loose and we get them in a capped sterile plastic bottle container

[MCC]

First things first -- get a bone density scan. My doc ordered one before I even had a WG diagnosis -- it should be standard protocol. They are also cheap and easy -- insurance doesn't push back.

Then, treat what's there, not what may develop (although with pred it's probably more like what will develop. I was never on it at the doses most of you are on, and never for even 10 days at a time and my bones are totally wrecked). It has not been proven as a preventative. Whether the risk of jaw rot across all populations is equal I can't say but I know a lot of people have difficulty even taking this med (I have not) and that would be reason enough not to take it if it hasn't been proven to work!

I will ask my doctor about the scan thanks..not sure I will be able to have one though, as treatment is free in New Zealand so they will only do what's strictly necessary.

I've stopped taking it for now until I see my doctor. A nurse told me it didn't hurt to miss a couple anyway.

[Doug]

I had contact only with the 5mg and 20mg..
Next week I am going to the pharmacy I will ask if theres a smaller dosage.


I ended my Prednisone torments on a 1mg dosage pill. It was impossibly small to get down, and frequently got stuck between my teeth and cheek, dissolving slowly and with a particularly biutter taste!

[elephant]

Doug how long were you on Prednisone and how long did it take to taper you off it?

[Sangye]

LOL--I'm breaking them into 4, Doug! Pred--it's a bitter pill to swallow.

[Doug]

Doug how long were you on Prednisone and how long did it take to taper you off it?

I was on it from January 2004 (perhaps earlier- I was so out of it, and I doubt I asked any questions about medication or why I was taking it) till April of 2005. I can't find the schedule just now, but it seems like at the 20mg step, I was dropped 2.5mg per month till I hit 10mg, then I was stepped down 1mg a month.

[Doug]

LOL--I'm breaking them into 4, Doug! Pred--it's a bitter pill to swallow.

Gad! And the ones you split tend to taste the worst! They also tended to stick between my teeth and cheek a lot of the time.

[elephant]

Doug, you were on for a short time. That is great. My sinuses are not liking it right now. I am down 8 mg of prednisone and weaning very slow at 1 mg every 6 weeks. I have been having mimicking like cold symptoms, no nose bleeds or crusting. Just feeling like a sinus infection or cold. I started to take full strength Bactrim today, if it does not get better by Monday, I will call my local Rhuemy.