MS and Reclast?

[kymrob91457]

Hi. My name is Kym. I've had MS for 32 years, and I have really bad osteoporosis. My bone Dr. wants me to start Reclast. But, the more I read about the side effects, the more I don't want to take it! Has anyone hear been on Reclast? What happened to you? I've heard terrible stories about Reclast from normal people. What can it do to someone with MS?

[Iona60]

What about one of the regular osteoporosis meds. I'm on actonel with no problems.

[CherieMSCN in reply to Iona60]

I was on Fosamax, Boniva, Actonel and all caused moderately severe reflux and esophageal erosion which is why I went on Reclast. As I understand it, Reclast is a second line drug to be used ONLY if the others have not worked or are not tolerated.

[kymrob91457 in reply to CherieMSCN]

Hi CherieMSCN what side affects did you have with Reclast?

[CherieMSCN in reply to kymrob91457]

Mild achiness for a few hours. I was not well hydrated and all doses after the first were fine with no side effects. So much easier to take than the orals or nasal sprays.

[Iona60 in reply to CherieMSCN]

I take actonel with 20 oz of water. So far I haven't had any reflux or esophageal problems.

[CherieMSCN in reply to Iona60]

I took all of them orally with no problem for 2-3 months each but none of the orals for nearly 3 years of regular dosing reversed the osteoporosis. We are each different and need to follow the recommendations given to us but I am just letting Kym know, in response to her question, that Reclast was easy for several years with no significant side effects that were negative and it reversed the thinning.

[Iona60 in reply to CherieMSCN]

I appreciate all of your info. I'll have a bone density scan at the two year mark. I sure hope that it's been working.

[greaterexp]

I'm on Prolia and so far have had no problems. A friend told me the doctor wants her on Reclast. I'll have to check it out for her.

[erash]

I agree with Iona60 kymrob91457

There are a number of other bisphosphonates

Recast has the advantage of once a year but the flu like symptoms are somewhat worse --otherwise they all have the same potential symptoms (as does prolia -a every 6 mos drug - which might be the one I'd choose)

A fracture from a fall may be a greater harm than the risk of the drug

[Iona60 in reply to erash]

Why would you choose prolia?

[erash in reply to Iona60]

Prolia is twice yr dosing, no esophageal issue because not oral.

Similar potential side effects to bisphosphonates but my patient prescribing experience is better tolerated.

If you can get insurance coverage of course (you used to have to prove you tried a bisphosphonates and didn't tolerate)

[kymrob91457 in reply to erash]

Thank you! Dr. won't put me on Prolia because I test positive for the JCVirus. She said it could activate it. I really don't want PML...brain virus!

[Iona60 in reply to kymrob91457]

Wow! Who would have guessed that?

[Eleyne92]

kymrob91457 , I've been on Prolia for several years with no negative side effects. When I was first diagnosed with osteoporosis, my Dr put me on Forteo to rebuild the bone loss due to steroids. It worked well for me, again with no negative side effects. After that, we tried one of the oral treatments but it didn't work so we switched to Prolia.

[CherieMSCN]

After breaking my foot badly in 2005 and trying other meds for bone density that did not help, I was put on Reclast. I had a dose a year for 7 years. My bone density has returned to near normal and other than a bit of achiness after the infusion (which never happened again after the first dose) there were no noticeable side effects. I would not hesitate to take it again. You are in and out of infusion within a half hour. Hydrate well before going to minimize any achiness. I have not had ANY steroids since 2005 as I was advised they were the main cause of the bone thinning. My Dr now uses IVIg if I have a major relapse for which I would have otherwise received steroids. NOTE: Acthar Gel causes the same types of bone thinning as regular steroids.

[kymrob91457]

Thank you all! I forgot to mention. I have broken my wrist, pelvic bone, ankle, and femur. Plus a few shoulder bone fractures. Almost every time…. I fall, something breaks. But I'm in an electric wheelchair now, so chances of falling are less. I cancelled my infusion today.....so confused! My Dr. told me it caused flu like symptoms. A fever just about sucks the life out of me. Plus she said those symptoms could last 2 weeks!!

[CherieMSCN in reply to kymrob91457]

Could....but very unlikely if you hydrate well. I am extremely heat sensitive with even slight temperature elevations. I never had elevations with Reclast. Only had mild achiness due to dehydration.

[BigMar7]

I have been taking Reclast for at least 3 years now and never had a reaction. I like the fact that it’s only once a year. 😀