Facebook!!!

[Squiggled]

Never been a big Facebook fan, but reading posts by people that have similar interests or ailments has really been filling a spot lately for me. It is a sense of understanding, compassion, and distraction ( love the randomness of some posts :) ). Please add me so my news feed stays full and we can get to know each other. I think I am going to try and branch out! I think you can find me under Heather McLemore in either Lacey or Olympia Washington. Hope to see you soon!


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[annekat]

Nice to see you on Facebook, Heather!

[Squiggled]

Thanks Anne! Guess I should get with the times lol


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[annekat]

Thanks Anne! Guess I should get with the times lol


Sent from my iPhone using TapatalkWell, that is, if you HAVE the time. I really don't, and spend too much time on it. But if it helps save my sanity, I guess it's worth it. Without the contact with my Weggie friends, whether on the forum or Facebook or both, I would feel very isolated.

[Alysia]

But if it helps save my sanity, I guess it's worth it. Without the contact with my Weggie friends, whether on the forum or Facebook or both, I woule feel very isolated.

same for me. I need to live in my weggie world for some time each day. my daily world does not understand me and it feels lonely eventough there are people and family around. even friends.
lonliness is when you are not understood at your biggest sorrow, pains or fears. once you are, then you are no more lonely. in my weggie world I am not lonely as I am in my daily world, in which I should function, work, take care of the house, kids, etc.
this is why I am so grateful to my weggies friends.

[debhaz22]

Alysia,
you worded that PERFECTLY. At least we all have each other :)
Deb H

[Alysia]

Alysia,
you worded that PERFECTLY. At least we all have each other :)
Deb H

Thanks. I couldn't have make it without my weggie family :hug1::wub:

[jvilner]

Perfect thread for me today. Did that Reclast infusion yesterday and feel so bad today. It's expected but still I feel bad and no one understands. Knowing this weggie family understands helps.

[Alysia]

Perfect thread for me today. Did that Reclast infusion yesterday and feel so bad today. It's expected but still I feel bad and no one understands. Knowing this weggie family understands helps.

Hi Joyce,
I am sorry for you bad feeling :sad: what is the reclast infusion ?
sending hugs. please share more if and when you will feell like.... :hug1:

[jvilner]

Thanks Alysia! It's Zoledronic acid. It's supposed to help your bones stay strong if you are on steroids a long time. It's usually given in pill form once monthly but can irritate esophagus. Since I have problems there I needed to do it by infusion. The infusion is once yearly. Just feel like I have the flu today. My rheumi told me to do it as looks like I will be in steroids still. Down to 20 mg now.

[LisaT]

Perfect thread for me today. Did that Reclast infusion yesterday and feel so bad today. It's expected but still I feel bad and no one understands. Knowing this weggie family understands helps.

I don't know what the procedure is either, but I'm sorry you're feeling bad. I often feel sad or upset after an appointment or a test, and I think it's because it forces me to think about and face the reality. If I'm busy going about a day on which I'm not in patient mode, I can sometimes forget briefly and just go about the other aspects of my life (if I'm not feeling too bad). But on a dr. day or procedure day, that's impossible and you have to see yourself as the 'sick person' which doesn't feel good. I hope tomorrow is a better day for you!

[LisaT]

I hope tomorrow us a better day for you...

[jvilner]

Thanks everyone. Just woke up and actually feeling better. Confused that nobody knows what I'm talking about. My rheumi told me that someone taking steroids for long period must take care if their bone density hence the treatment I did. Maybe it's for post menopausal women?

[Alysia]

Thanks everyone. Just woke up and actually feeling better. Confused that nobody knows what I'm talking about. My rheumi told me that someone taking steroids for long period must take care if their bone density hence the treatment I did. Maybe it's for post menopausal women?

Hi Joyce. sorry. I never heard about it :confused1:
you can open a new thread under "medication" and ask about it, with title of the name of the med.
I am glad that you are feeling better today.
that's wg thing is a rollercoaster.... :sad:
but if you have us with you, then you can "scream" not only out of anger and fears but sometimes out of playfulness here....
sending hugs.... :hug1:

[Alysia]

At least we all have each other :)
Deb H


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[annekat]

Thanks everyone. Just woke up and actually feeling better. Confused that nobody knows what I'm talking about. My rheumi told me that someone taking steroids for long period must take care if their bone density hence the treatment I did. Maybe it's for post menopausal women? No, it's just that you got a different version of the bone density treatment than what a lot of us do, if we do it, and we weren't familiar with the terminology or the brand name Reclast if it's a brand name. A lot of us are advised to take a supplement called Fosamax, or Boniva, some of the brand names for biphosphonates (I think), but I think most of us take them in pill form, once every week, month, or year, depending on the dosage specifications. There are some warnings about them and some prefer not to take them. Something about problems in the jaw and possible fractures of the femur. My doc says to take it but not for more than 5 years. Anyway, I'm pretty sure this was the type of treatment you got, just not in the way we are used to hearing of it given. Although I think I've heard of Boniva being given by injection. The actress Sally Field has done ads for it. But no, I don't think it's just for post menopausal women, necessarily.

[Lilly]

Hi jvilner, I am going to ask my Rheumy about that medication. I have been taking prednisone for 24 yrs, and am supposed to be taking Boniva once a month. But for some crazy reason, I just don't, because you have to wait an hour after you take it before you can eat or drink anything. And eating is no big deal. I am hardly ever hungry, but I NEED MY COFFEE! (that's stubborn of me) But if I had a once a year med that I could take once a year, that would be great! I have broken many bones just by a small trip and "snap", there goes a hand bone that needs surgery and screws and pins to heal! I wrote that med down. Def gonna talk to Doc about it! Thanks~

[annekat]

Hi jvilner, I am going to ask my Rheumy about that medication. I have been taking prednisone for 24 yrs, and am supposed to be taking Boniva once a month. But for some crazy reason, I just don't, because you have to wait an hour after you take it before you can eat or drink anything. And eating is no big deal. I am hardly ever hungry, but I NEED MY COFFEE! (that's stubborn of me) But if I had a once a year med that I could take once a year, that would be great! I have broken many bones just by a small trip and "snap", there goes a hand bone that needs surgery and screws and pins to heal! I wrote that med down. Def gonna talk to Doc about it! Thanks~ Lilly, I am the same way! I'm supposed to take mine once a week, and was doing it OK, but have stopped, pretty much. I hate having to wait to have my coffee, too. But I also think I've been taking it for 5 years, which my doc says is the limit, in his opinion, and the fact that it is controversial makes it easier for me to blow it off. For a lot of people, doing a lot of weight-bearing exercise and taking calcium supplements is considered to be good enough. Actually, I don't know if I should be taking it or not. Maybe I should look into the once a month stuff. As for you, 24 years is a long time to be on prednisone, and if you are around menopause age, it could be pretty important to protect your bones. I don't know the pros vs. the cons and how they balance out in the long term.

[drz]

Hi jvilner, I am going to ask my Rheumy about that medication. I have been taking prednisone for 24 yrs, and am supposed to be taking Boniva once a month. But for some crazy reason, I just don't, because you have to wait an hour after you take it before you can eat or drink anything. And eating is no big deal. I am hardly ever hungry, but I NEED MY COFFEE! (that's stubborn of me) But if I had a once a year med that I could take once a year, that would be great! I have broken many bones just by a small trip and "snap", there goes a hand bone that needs surgery and screws and pins to heal! I wrote that med down. Def gonna talk to Doc about it! Thanks~

I use a generic Fosomax and it is half hour wait so I take it first thing and by the time I am dressed and shaved and ready for breakfast it is OK to eat. I wanted to quit but my last bone scan indicated I should stay on it.

[jvilner]

You're all correct. That's the stuff. Thanks for the info regarding taking it for only 5 years. Good to know! Hoping I'll be in remission and won't have to worry abt it 😉

[Alysia]

my GP told me not to take anything... my wg doc never mentioned it.... now I wonder maybe it is a problem NOT to take anything for the bones, since I am with my pred long ago.... but I eat healthy and walk/ exercise every day.... :confused1:

[annekat]

You're all correct. That's the stuff. Thanks for the info regarding taking it for only 5 years. Good to know! Hoping I'll be in remission and won't have to worry abt it  That was only my doc's opinion. It isn't set in stone. You can ask your docs and do some research. When I first started it I didn't know about having WG and wasn't on pred... my PA made sure I understood the risks and that they probably were outweighed the benefits. Can't say I've ever really understood, though, why something that is supposed to help your bones can be harmful to some of your bones. One member on here said it makes "inferior" bone. Don't take my word for it because I don't know. Worth some research. We should start a new thread, although this has been discussed in the past and can be found in the archives. I, too, hope you will be in remission well before then and off the pred!

[annekat]

my GP told me not to take anything... my wg doc never mentioned it.... now I wonder maybe it is a problem NOT to take anything for the bones, since I am with my pred long ago.... but I eat healthy and walk/ exercise every day.... :confused1: Your healthy lifestyle and walking every day counts for a lot. Having a bone density test would tell you if there is a problem. Lifting some weights and taking calcium with Vit D3 would also help a lot.

[LisaT]

my GP told me not to take anything... my wg doc never mentioned it.... now I wonder maybe it is a problem NOT to take anything for the bones, since I am with my pred long ago.... but I eat healthy and walk/ exercise every day.... :confused1:


I wondered the exact same thing on reading this… I've started adding these to my ongoing list of questions for the next appointment, as they occur to me, otherwise I'm likely to forget.

[annekat]

I use a generic Fosomax and it is half hour wait so I take it first thing and by the time I am dressed and shaved and ready for breakfast it is OK to eat. I wanted to quit but my last bone scan indicated I should stay on it. Me, too, drz, the generic Fosamax once a week. The half hour wait isn't too bad. I admit I've gotten lazy about it and need to follow through with another bone density screening and see where I'm at. And I really want that coffee first thing in the morning!

[LisaT]

Me, too, drz, the generic Fosamax once a week. The half hour wait isn't too bad. I admit I've gotten lazy about it and need to follow through with another bone density screening and see where I'm at. And I really want that coffee first thing in the morning!

I'm having an extra coffee today just because I can. Had to wait til about 1:30 pm yesterday due to chest CT (they needed to slow my heart rate). Hope i never have to wait that long for my coffee again! It made me realize I'm a total addict… but whatever. We all have our vices. This one seems relatively harmless...

[pberggren1]

Vitamin D, Cal/Mag and Strontium are a must for our bones. Coffee and soda drinks deplete our bones.

[annekat]

Vitamin D, Cal/Mag and Strontium are a must for our bones. Coffee and soda drinks deplete our bones. I'm taking the first two, but will have to look into the strontium.

[LisaT]

I've never heard of Strontium. I'll have to look at that too. So much research! I feel like I have a full-time job again, only one i'm urgently motivated to do even when exhausted...

[annekat]

I've never heard of Strontium. I'll have to look at that too. So much research! I feel like I have a full-time job again, only one i'm urgently motivated to do even when exhausted... I've only heard of it because I make pottery and it's a mineral that is used in glazes sometimes. I meant to look at my multi-vitamin/mineral supplement to see if it is in there.

[Jaypfei]

Took Fosomax first and had some really bad stomach issues with that. I'm currently taking Forteo injection every day and have finished my first year. I have till April 2015 and I shouldn't have to take another osteo drug again.
I might add that I had been exercising, eating well and taking cal citrate +D long before GPA Dx's. It still did not prevent the bone loss. I'm certain that having a Mom and Grandmother that had back humps that would rival Quasimodo probably upped the stakes for me as well.

[annekat]

Took Fosomax first and had some really bad stomach issues with that. I'm currently taking Forteo injection every day and have finished my first year. I have till April 2015 and I shouldn't have to take another osteo drug again.
I might add that I had been exercising, eating well and taking cal citrate +D long before GPA Dx's. It still did not prevent the bone loss. I'm certain that having a Mom and Grandmother that had back humps that would rival Quasimodo probably upped the stakes for me as well. I hadn't heard of that treatment, it sounds pretty good if it is permanent like that. I also have a genetic predisposition, my mother had a bit of a hump.

[Dirty Don]

Danny, if YOU think there's interesting stuff on here then you should participate also. This blog talks about all kinds of things interesting to WG and then some. Look forward to YOUR participation, blogger or not, you can do it.

[Alysia]

If you guys really think there's something much interesting and people shouldn't miss it then please allow me to be a part of this & let me know further about it.

maybe it is my poor English, but I think that I didn't understand what you were trying to say..... ?

[annekat]

If you guys really think there's something much interesting and people shouldn't miss it then please allow me to be a part of this & let me know further about it.Danny, you already are a part of it, since you have joined. Do you have WG? We'd like to know more of your story and how things are going for you, and are available to answer any questions or concerns you may have. We are an open group and are not judgemental about whom we share information with. You can learn a lot by browsing current and past threads, and searching the archives for specific terms or issues.