New to the site

[Liz134]

I have Crohn's for 35 years and for the last 3 years have been receiving Remicade every 6 weeks and for the most part it is working. I now have been told I have a slight calcium deficiency and my family doctor has recomended Prolia shots (twice a year). I looked this drug up and there seems to be some possible side affects such as compromised immune, skin rashes etc. I am not sure if I want to take this or not, has anybody had any experience with Prolia and if so how did it go.

_________________________________________________________________

Diagnosed 1977
Prednisone, Cortisone enemas
Sulfa Zine (found to be allergic to Sulfa based drugs) Asacol
Pentassa, Salofalk
Partial Resection 2010
Currently Remicade Infusion every 6 wks

 

[Angrybird]

Hello and welcome to the forum When you say 'for the most part' does that mean you still have a few niggles with the tum? I have not heard of Prolia myself so could not advise hopefully someone will come slong shortly who can help with this.

With you experience with this disease (35yrs - wow) I am sure that you will have some really helpful knowledge to share so I am glad you have decided to join.

AB
xx

 

[Liz134]

hi Angrybird, thank you for your welcome I appreciate it. That is true when I say it works for the most part. I have to take the Remicade every 6 weeks, but during that last week I find it is "a little touch and go" if I have a great week or stop several times during my hour drive to work. Evidently Prolia is an injected medication that aids with mild calcium and Vitamin D loss due to the Crohns. When reading the possible side effects I became a little concerned. Evidently it can cause an even more supressed imune system, possible skin rashes etc and I don't know if I want to chance it.

During my 35 years with this disease I have gone through the wringer sort of speaking from hospitalization for 6 months, to boat loads of different meds like prednison, cortisone enemas, Pentesa,Azathioprine and bowel resection April 2009. I hope I can contribute to this forum.

have a great Day Liz134

 

[David]

Hi Liz and welcome to the community!

If you're deficient in calcium, there's a good chance you're also deficiency in other vitamins/minerals as well. Have they tested you for vitamin D, vitamin B12, magnesium, and folate deficiencies?

I haven't heard of prolia so I copied your thread to our treatment forum and changed the thread title there so that you'll hopefully get some responses. That copied thread is located here: http://www.crohnsforum.com/showthread.php?t=39471 if you want to keep an eye on it.

Again, welcome. We're here for you!

 

[Liz134]

David

thank you for your repsonse and I apologize for the tardiness in my reponse but I was on vacation for the last while and just returned today. Yes I was tested and found to be deficient in Vitamin D but ok for everything else.

 

[David]

No worries Liz, I hope you had a great vacation!

What was your specific vitamin B12 level, do you know? Are you supplementing for the vitamin D deficiency?

 

[Liz134]

Morning

thank you, vacation was fantastic and just had a wonderful time. I cannot remember what they said my level was and no I am not supplementing vitamins as I am one of those people who will remember for a few days and then start skipping and before you know it a few weeks have gone by before I take them again. Always been bad at taking any type of medication.

 

[michaelearnest]

Liz - I have a serious question here. Do you think you felt better being on vacation? I ask that question because whenever I go on vacation or away for the weekend, I seem to always feel better. That takes me right back to the point where I think all of these stomach issues could go away if we could eliminate stress.

 

[Liz134]

hi Michael

you could be right, I did feel better on vacation away from the stress I feel at work and at home. While on vacation time was mine and I could just relax and "smell the roses" where at home and work everything is rushed. I have tried stress managment but I think I just did not like the instructor as I don't think I gained anything from it. Right now the way for me to relieve stress is to take my dogs to the lake (live next to Lake Ontario) and let them run and play during our 4 mile walk. This always seems to help, but then back to reality and it starts all over again.

 

[michaelearnest]

Liz

Every night around 10pm here close to Cleveland, my black lab starts following me around. She knows its time for her nightly walk. I agree, the walk is my time.

 

[Liz134]

You know not sure it is the walk, I honestly think it is the girls (chocolate lab and rotweiler/sheppard cross) that help with the stress. They are just wonderful.

 

[723crossroads]

I have Crohn's for 35 years and for the last 3 years have been receiving Remicade every 6 weeks and for the most part it is working. I now have been told I have a slight calcium deficiency and my family doctor has recomended Prolia shots (twice a year). I looked this drug up and there seems to be some possible side affects such as compromised immune, skin rashes etc. I am not sure if I want to take this or not, has anybody had any experience with Prolia and if so how did it go.

_________________________________________________________________

Diagnosed 1977
Prednisone, Cortisone enemas
Sulfa Zine (found to be allergic to Sulfa based drugs) Asacol
Pentassa, Salofalk
Partial Resection 2010
Currently Remicade Infusion every 6 wks

Prolia is fairly new. Isn't there anything else they could offer till you see how Prolia holds up to the test of time? I don't like taking brand new drugs. I would ask for one that is proven safe. Some Dr.'s get kickbacks for prescribing certain drugs. It's your life, not theirs.:thumbdown: Just say no!

 

[Liz134]

Morning

thank you for the information, I could not find very much information about Prolia on the web so that is why I am questioning it. I am not sure if there are any other drugs that will be ok to mix with the remicade that will have less potential side effects. I guess best thing is like you said if I am this uncomfortable with taking it just say NO. Thank you for the kick in the pants to stand up for what I felt was best for me.