18 replies to this topic

[Texas Angel Ang]

Hiiiiii everyone! Longtime since I have posted anything or been on here... as some of you know a lot has gone on in my life but I'll get to that later.

As of right now, I have some questions for those of you that have been diagnosed with osteoporosis. I was diagnosed with osteoporosis in October I believe (my days get blurry since so much has happened). My bone density test revealed a significant amount of bone loss. Of course this is not really registering in my head until they showed me the x-rays of my hips. You could literally see through what should be bone. Only my hips outline was showing pretty much. They couldn't get a real good look at my spine since it is covered in metal from scoliosis surgery prior to my accident and then all the hardware in my neck... so the hips were the only place they could see and that was enough for them to want me to start the IV drug reclast immediately.

This drug is done once a year through IV and should reverse the significant bone loss within three to four years. There are side effects but nothing life-threatening. Soooo I went and had my blood work done to see what my calcium level was and another concern popped up, my calcium level was too low to start treatment. My doctor prescribed me more vitamin D (didn't even know that was possible) I took it for three days and had more blood work done. I get a phone call saying that I could not start treatment because my parathyroid levels were extremely low!

I was going through a lot (I'll write about that after this) during that time and that got pushed to the back burner for a couple of days. I then started researching online about the parathyroid, what it does, how to "fix" it, etc. etc. I immediately scheduled appointment with a specialist and he explained everything to me. Again more blood work was done to see if the prescription vitamin D had any effect on me... I hadn't had any blood work since I took the prescription vitamin D. Luckily when I was at the specialist it was exactly a month since I had taken it. So now I'm just waiting for the blood work to show if the vitamin D worked, if not my doctor will prescribe a higher dosage of vitamin D and hopefully I can start the reclast.

Here is my problem, I have a very weak stomach, starting all these new vitamins that I should have been on to begin with has made me very nauseated constantly. Dealing with osteoporosis is one thing but it's another when you're parathyroid is not working correctly! I'm lucky that it's LOW and not high. It's weird because I have the symptoms of a higher level of my parathyroid rather than a lower level of my parathyroid. Which makes me concerned that there could possibly be something else wrong...

So there's that... I go back next week to see if my calcium level/vitamin D is ready for osteoporosis treatment. Anybody been through this or have any suggestions on how to cut back on the nausea??

Off to my update about me...

[greybeard]

Hi Ang. You've been missed. Glad you are back with us.

Can you get Maxolon over there. I find it helps for occasional nausea.

[Texas Angel Ang]

Thanks GB, have missed you guys as well

does that cause drowsiness?? I take Finnegan (sp?) But that knocks me out!

[Trinity]

Fennigan? If so it's an antihistamine which does def cause drowsiness, my friend uses it to knock her kids out on long plane journeys! Maxalon is metoclopramide, another very good antiemetic is ondansetron (Zofran) it's great for hangovers too!

[Texas Angel Ang]

Haha Trinity okay that is not what I'm talking about, what I'm talking about is for nausea, they put it in IVs and so forth... let's see if I'm spelling this correctly now, phenergan I googled it lol. I think I had zolfran before and it did not knock me out... I'll ask my doctor for it, thank you.

[Trinity]

Haha we're both right (wrong spelling!) it's an antiemetic antihistamine!!! http://en.wikipedia....ki/Promethazine. Anyway thats besides the point, the fact is there are better drugs out there!

[Texas Angel Ang]

Haha, true! I'll talk to my doctor and see what she can prescribe me!

[Texas Angel Ang]

Quick Update: I went to do my follow-up appointment yesterday... parathyroid levels are NORMAL, I can now start the IV treatment Reclast (hopefully by the end of the week).

They did a lot of blood work and I tested positive for RA (not really surprised). I'll have to go to a specialist for that. Not really sure what there is to do treatment wise for it. Anyone else have it?

[Soryfam]

Texas Angel Ang, on 14 December 2010 - 11:10 PM, said:

Quick Update: I went to do my follow-up appointment yesterday... parathyroid levels are NORMAL, I can now start the IV treatment Reclast (hopefully by the end of the week).

They did a lot of blood work and I tested positive for RA (not really surprised). I'll have to go to a specialist for that. Not really sure what there is to do treatment wise for it. Anyone else have it?

I have been diagnosed, but I don't have it nearly as bad as some people I know. There are pills (methotrexate, which in my opinion has way too many side effects.)There are also several Iv's that can be given. I don't have any experience with these. Hope the RA stays mild.

Sandy

[Texas Angel Ang]

Thanks, Sandy.

Unfortunately since it's the holidays and so forth, I didn't get to start my treatment for osteoporosis this week. I have a appointment scheduled for Monday though. I will then go see a specialist for RA. I don't want to take any medications that have too many side effects. I'm praying that it is mild as well...

[Texas Angel Ang]

I finally got my "Bone Juice" Reclast. The side effects were exactly what they said it would be, flulike symptoms. The next time I have it I will just sleep for 3 days with nausea medication lol.

I'm starting to feel weird sensation, some pain and heaviness in my legs, even my mom said my legs feel heavier when transferring and so forth. Just wondering if anybody with osteoporosis and treatment has experienced this kind of feeling??

[jules]

Hi Ang, I am about to go through this myself, my latest Dexa scan showed my t score to be -3 which is with me being on bisphosphate drugs and calcium+vitamin D. Mine is exacerbated massively with me being on steroids for my lung disease. I am seeing a specialist in a couple of weeks so we'll see what he offers me. We can compare effectiveness and side effects.

Hope you feel better soon.

xx

[Texas Angel Ang]

Hey Jules, long time no talk, hope you are feeling well.

I don't remember my score on my bone density test scan, I just remember seeing my "hips" that were not there! Just the outline!! Are you considering doing a once a year treatment, Reclast?? I guess it depends on how it will effect the other medications you are on.

I feel good actually, I think that the pain is from RA or possibly the treatment working

let me know what treatment you decide to do and we can absolutely compare the effectiveness!

Xx

[jules]

I'm not too good to be honest the lung disease has really taken a turn for the worse. The chances of me having a fatal bleed are high. I also had a pulmonary embolism in November so I am on bloodthiners again, I have got virtually no undamaged lung left. However i am still fighting on i have a racing wheelchair did my 10k race for cancer research, doing a half marathon in March and then my 110 mile sponsored walk/roll again.

xx

[Texas Angel Ang]

Wow Jules, I don't even know what to say, you are a true fighter. Glad to see that you are still ENJOINING life!! Keep on rolling girl,

message me if you want to talk privately

[mellowgator]

ang,

i was naueseous while i was pregnant and i had a hard time taking vitamins. one trick that worked for me was to take the vitamins before bed.


sorry to hear about your health issues.


mellowgator

[Texas Angel Ang]

Karen,

I forgot to tell everyone, I'm no longer having issues with the vitamins, I guess my body just wasn't used to it. Also I was taking too many... I was trying to get my parathyroid levels up and was taking too much Vitamin D lol. My doctors exact words "no no no no, you don't want to overdose. Only take three a day."

I'm actually feeling better

[goose]

i know it has been a while since you posted here. i was wanting an update plus exactly how much vit. D are you taking? have you seen any improvement?

[janie clarice]

Hi Ang, I too have ostp. I had the reclast shot, then other tests revealed -5 for bone density, my Dr. said reclast wasn't gonna be enuff so he has started me on Forteo IV. 1 shot daily for 24 months. I have had so much neausa, and that darn phenagren, uck! I didn't know there was anything else, so you have helped me. I'm looking forward to your posts. I hope your feeling better, and that the reclasp works.