Take nothing after Evenity

[cmoc]

I finished with Evenity 3 months ago, tried Actonel and Raloxifine to hold on to the gains, both gave me bad migraine. My consultant is now suggesting I take nothing, just Vitamin D, will I hold on to the gains with just Vitamin D? I thought we had to have something to keep the gains.

[Rhubarbtr]

I think you should question this. There are other options than the drugs you’ve tried. Can you get a second opinion from another consultant?

[cmoc in reply to Rhubarbtr]

Hi, yes I didnt think this was right. The consultant thinks that if one bisphosphonate doesnt agree with me, the others wont. Hes a very nice man and has worked with me so far. I cant take Forteo as it gave me MGUS and I refuse Prolia, so I realize the options are limited. My gains with Evenity were good taking me from -4.5 to -3.7 but I am not in a position to be able to let these drop and I am already off Evenity 3 months.

[Raleigh59 in reply to cmoc]

What is MGUS?

[cmoc in reply to Raleigh59]

monoclonal gammopathy of undetermined significance. Abnormal antibodies. Rarely it can lead to myeloma (bone cancer). I have my blood checked now every 4 months. Seeing as they found that in rats, its wise for me not to continue with Forteo

[Raleigh59 in reply to cmoc]

Can you tell me about mgus. How do you know you got that reaction? I was on Tymlos and I had such a bad pulse in my head that occurred every time I I took it - I never adjusted to it.

I tried for a long time and did low doses etc.

I now just do weights at the gym and stretch class, have a coach, go to the gym and have coach about 3-5 times a week, free coach at planet fitness. Best thing I ever did. On a stressful day I go to 3 gym classes. By the way I am slim but I’ve always been very non athletic.

Now I see how important it is, when you are athletic if you fall, you can often fall well. It’s very wonderful to be fit. I go to the gym as often as I can. I hope it will help my bones.

I also do vitamin D, K2, plant based algae calcium, magnesium.

[M3745 in reply to cmoc]

I was diagnosed with Mgus when my dexa showed I had osteoporosis. I then went on to take 2 years of Forteo and then another year for a total of 3 years. The black box warning was removed. My Mgus is stable and my doctor says I only need to see him once a year. In the beginning, it was every 3 months bloodwork, then every 6 months and now yearly. I’m on 35 mg of fosomax. I have Gerd but I’m doing well with the low dose.

[cmoc in reply to M3745]

Are you on the A Acid tablet? I am trying the liquid at low dose, but migraine already. There are additives to the liquid like citric Acid and Ethonol which may be giving me the migraine but I fear it may be the same as the Actonel which gave me terrible migraine. It would be great if I could get up to 35mg at least and hopefully that would maintain my gains from the Evenity. When you say your MGUS is stable do your Kappa Protein levels still keep going up on each blood test? Mine do, but all the other tests for kidneys etc. are OK so they say I am OK and its normal for this to happen, but its a bit worrying all the same.

[M3745 in reply to cmoc]

My Kappa levels are pretty consistent, in the beginning they varied a little more though. They’ve always been well within range. I’ve read that the Kappa Lambda Ratio is what really matters. I take curcumin and Quercetin as I’ve read that has helped some people keep from progressing. I figure it can’t hurt

I take the 35mg tablet of AA. I’m 4 months in and I’m thinking about stopping it altogether as I’m starting to have some side effects that are concerning me. I’m taking a few weeks off to see if they subside. Honestly, I worry about the long term effects of these drugs and our denser bones might end up being brittle bones.

[cmoc]

Thankyou M3745, that is interesting. I did wonder if the Forteo was to blame. They discovered the MGUS when doing tests because I had lost weight, they were looking for cancer. My MGUS is stable but the Kappa Protein level seems to go higher and higher on each blood test which is worrying but all the other blood tests are OK so they dont seem concerned. I am not sure I would now feel very happy taking Forteo but it may be that I have no choice in the future. Is the 35mg of fosomax enough to hold your gains?

[M3745 in reply to cmoc]

I’ve read studies that the 35mg is just as effective. Also, I’m a small person and with Gerd, I doubt I could handle it. My primary doctor doesn’t like the idea of me taking it at all.

[Posy-White]

Hello cmoc

Sorry to read you're having problems I've been following your question very interested to read what others might suggest. I also understood you had to have a 'follow up' medication after Evenity Forteo.

When I started Forteo in 2018 I was with one hospital and then transferred to another hospital during the 2 year course. On finishing the course in July 2020 (in lockdown) out of the blue I had a phone call from the Consultant from the first hospital checking I was on some other bone medication having finished the course. I was on a one year of course of an Infusion of Zoledronic acid, bisphosphonate sorry no help!

I understood the new Romosozumab was not a bisphosphonate but I’m not sure which group it’s licenced for. May be an idea to call one of the specialist nurses at the ROS helpline – I know they cannot advise on individual cases BUT very helpful with suggestions they will be able to tell you which meds are not bisphosphonates and if I’m right about Romosozumab will be able to tell you more about it.

Good Luck in sorting something out

Best Wishes

Posy White

[cmoc in reply to Posy-White]

Thankyou for your reply. Yes I should try and ring them again, I couldnt get through the other day, you have reminded me☺️

[HeronNS in reply to cmoc]

I hope you got through to ROS?

I've read on here a number of times that people having difficulty with other osteoporosis drugs have done well with zoledronic acid, but am not in any way qualified to recommend or otherwise any medication. Just a suggestion that it might be worth asking about.

Given the disaster many suffer when they don't follow up Prolia with something else, and Evenity is the same kind of drug, you really must pursue finding a safe and effective follow-up medication. Normally I'd recommend taking supplements (Vitamin K2 not just D) and there's certainly no harm in that, good idea in fact. But the after-effects of some of the modern drugs require something stronger as well as vitamins. 🍀

[cmoc in reply to HeronNS]

Thankyou Heron, I have just started liquid Aledronic Acid but have tried just a small amount from the bottle first, today, horrible migraine, not looking good again! I will wait a day then try some again (all the time my bone gains are going down!) This is a bit of a nightmare. I hope that Evenity is not the same as Prolia (there are some people that think you can get the same awful rebound fractures as Prolia but I think most of the reading is that you will loose the gains but more slowly over a year or two. Yes I will start on some K2, I am already on plenty of D supplement, took me from 35 to 105 in the reference range, so the D is doing OK.

[HeronNS in reply to Posy-White]

Evenity is a biologic, like Prolia (the chemical name ends in "mab").

[MayGodBlessYou]

a specialist said to me that prolia follows evenity, when i asked for my Mum, who has been on prolia for years;

upon advice from another specialist, my Mum did not change anything,

is just staying on prolia.

has any dr mentioned fosamax?

i wonder if you could have actonel or fosamax in a smaller dose, if a specialist could find a minimum effective dose!

good gains result you have there.

here's what i have done in the past; i have found a specific research paper or publication that i have questions about, and have contacted the author or authors.

[cmoc in reply to MayGodBlessYou]

Low dose Actonel gave me 5 x classic (flashing light) migraines in 3 weeks, changed to Raloxifine, 60mg every 2nd day, after 8 days had an 8 day long migraine, now just got Alendronic Acid in liquid form, took first low dose yesterday and today, migraine, not looking good, but will try again in a day or so. I wonder if the zolendranic acid injection would be better on the migraine, problem is, once the injection is in, we are stuck with it unlike the oral tablets and solutions.