cheshirecat 20/04/17
Last reply 9 months ago
Please help me understanding Plegridy!

Hi all.
I refused to start a Tecfidera protocol due to the huge list of side effects, that I don’t think are reasonable in my actual condition. I’m almost normal, wouldn’t even visit a doctor in case I wasn’t diagnosed with RRMS (I had two eye episodes, that’s why I made an MRI and was diagnosed, but healed spontaneously). Sometime my vision is a little blurred, sometimes I feel needles and pins in my left hand, sometimes I feel my left foot more heavy than normal, but never too hard or for too long. So I decided that I wouldn’t take all those risks.

But I know I have the condition and need to retard its progression and of course I want to do it. So my Neurologist gave me Plegridy (to inject).
I am not sure about what kind of medicine this is, and have two main questions:

Is it immunosuppressor?
Is it a DMT (and what does this mean)?

Please help me, I’m confused. I don’t want to allow my MS to go nasty but don’t agree with immunosuppressors. My imune system attacks me, I know that, but it also defends me. I don’t need to take the risk of being seriously vulnerable to lots of infections, I don’t think it would be good to suppress my imunity!

Sorry for rambling. Thank you!

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stumbler
10 months ago

@cheshirecat , all Disease Modify Treatmants (DMTs) are immuno-suppressants. They don’t stop the immune system working, they just try and stop our immune system attacking us, so frequently and so severely.

There’s a lot of detail here for you:-

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/disease-modifying-drugs

Don’t worry about rambling. It’s better out than in! 😉


cheshirecat
10 months ago

Thank you @stumbler! You always provide a good state of mind, sometimes in a simple and short phrase.

I opened the link and read everything, also opened other links from there, and printed a lot of good information. I’ll have a lot to read. But I must admit I was hoping that Plegridy would not interfere with the immune system……. maybe I’m still a naive MSer. I feel deeply inside this sentence in you link:

“Your MS team will step in quickly if there is any cause for concern. However, some people may feel that, despite regular monitoring, they are unwilling to take the risk of developing serious side effects.”

…. oh well. I guess I’ll have to give up some of my believes, even if there are people who do not want to take the risk. I already refused Tecfidera, due to the riks and his one (plegridy) was given to me as “the less aggressive”. So I guess I’ll accept it… I’ll have to make up my mind before the next appointment with my Neuro, which in a week.

She accepted that I’ll also make the Vitamine D Protocol (huge amounts of it!). So I’ll try both. I would prefer to stick to Vitamine D only, because it seams more natural to me, but I was not able to get an appointment in the clinic that performs those treatments before middle of May. And I feel unsafe and this is a horrible feeling. I want to make something to slap this thing right in its ugly face. I’m always tired (my worst symptom) for no reason or for a little nothing, like hanging clothes out of the washing machine. 🙁

Take care, my friend, and thank you very very much!


californiadreamin
10 months ago

@cheshirecat the choice of a dmt or even not having one is a personal one. Reading your post I am glad to hear you are doing well. My wife is in a similar situation and we are using Tecfidera. After researching heavily all options I wanted to let you know our reasoning in case it helps. While there is a giant list of side effects the very serious ones are super rare and they monitor for those conditions and can now mostly be avoided. The more common symptoms (like gi) can be annoying but in most people pass after a month or two. At this point my wife as no side effects from it.

The way these medications work is they bring down only certain cells of your immune system mostly in your blood and not in your lymph nodes. Of course it’s not as ideal as we like but in practice it’s actually something we don’t notice.

One of the other reasons that we went with Tecfidera is that ms is likely doing damage and using up brain reserves even if you don’t have symptoms. Many drs believe that protecting those reserves early help with things in the long run.

Lastly the other reason was that you can stop Tecfidera and everything clears out in 24 hours. So it’s an easy drug to try and still change your mind on.

Since it’s a big decision it’s always good to take some time to consider all the data.


cheshirecat
10 months ago

@californiadreamin It’s so good to see husbands and wives like you, researching for their partners and getting involved!!

Thank you for the information you provided. It’s good to share experiences.

However, Tecfidera is not the drug I’m about to start taking. Mine is Plegridy. First my Neuro prescribed Tecfidera but I decided not to go on it because I was really afraid of the heavy side effects, and Neuro prescribed Plegridy instead, as less aggressive. I’ll take Plegridy… I have to do something, haven’t I? 🙂

It’s good to know your wife has no side effects and is doing well. I’m happy for her (also for you) and for me too, even though the drugs are different. The most important and encouraging is knowing that our doctors and nurses, and the drugs we take, can actually help and prevent bigger damages!

Thanks again, take care.


honeysuckle
10 months ago

Hi Cheshire Cat

I won’t pretend that I know much about dmt’s or similar so thank heavens for the replies you’ve had so far lol. My only concern, and I could be wrong as it’s hard to detect tone from written words, but you don’t seem keen or clued up on what you’re taking…I get the impression you feel a bit ‘forced’ to take a dmt/drug or want of a better word? I just wanted to say Hun that there is no right or wrong and it’s YOUR MS and YOUR story so please don’t ever feel you can’t choose the path you want. Apologies if I got this wrong but I wanted to send reassurance to you that you always have a choice . I hope you find the answers you seek. Hugs x


californiadreamin
10 months ago

@cheshirecat and @honeysuckle

I think we are on the same page in general, mostly I was trying to communicate that my sense is the DMTs arent going to be a one time choice. It is very possible that at some point they arent going to work and a change will be needed. Its important to think ahead of time, what the next step will be and when to take that if things dont go as planned. This can also include coming off of a DMT. If my wife does stunningly well for the next few years, maybe we come off Tecfidera. If she has more problems maybe we need to ramp to something stronger with more risks. My main point I think is we should be generally aware of all our options and when to use them based on which criteria. Knowing about how they each work and what the actual/likely risks are important as well. Is a 1% breast cancer risk better or worse then a .5% PML risk? I think the former is way better because you can monitor for breast cancer and do something about it if you catch it earlier. Sadly everything is going to be a trade off at this point since there is no totally safe cure.


cheshirecat
10 months ago

@honeysuckle Good Lord, you went right on my mood!!! It’s so true, I’m not keen about heavy medicine and I am a bit clueless about taking this Plegridy or not, or if I did well refusing Tecfidera, or, well, everything that concerns MS treatments.
I understand very well that people accept to take those medicines if they are severely attacked by this condition, I surely would. People who faint everyday, or can’t walk, or have horrible pain or, or, or (unfortunately there are many symptoms surely hard to cope with), but it is not my case. I’m well. Besides the slight symptoms I mentioned in the original post, I wouldn’t even know I have MS. The aggressive episodes were just two. The first was 15 years ago and the second 4 years ago… and I recovered spontaneously from both. But the MRI (made it after 2nd episode) put a “sword on top of my head” and I never know if or when it will fall. That’s why I so reluctant about taking this drugs with side effects that will make me feel ill. I feel very tired many times. But if I rest, or take a nap, I fell good again.

I would love that waiting to see if things to stay still or go worse could be an option before deciding what to do. That’s the feeling you’ve read so clearly (although I didn’t wrote it!). I really would prefer not to take anything. But I guess the “wait and see” is not a good idea… so I’m trying to find my path.

Thank you sooooo much for your comprehensive answer!! 🙂
Take care xx


cheshirecat
10 months ago

@californiadreamin I understand all you’ve said. I guess your choice was good, and it is working fine. That’s good and encouraging!

I also “do that math” every leaflet I read… 🙂

But I hate everything I read. I always have the feeling that I’m ok and feel ok most of the time, and will feel worse just for the side effects (that seam to be heavier than my MS). Besides, I don’t like the idea of making the immunity low… As I said before, my immunity attacks me but also defends me. It seams strange to me to suppress it. But…. what if I should? Or if it would show up to be the best for me in the end? Hum…. That’s my great great problem.
This nasty condition is unpredictable.
🙁

Thanks and take care, you and your wife xx


stumbler
10 months ago

@cheshirecat , you’re right, MS is unpredictable.

The role of DMTs is to reduce the frequency and severity of relapses. They do not repair any damage that has already been caused to your Central Nervous System (CNS).

It would be great if we could see the future, but we can’t. So, adopting a DMT is a form of insurance for the future. We hope we don’t need to call on it, but it’s reassuring to have it.

The Neurological world are slowly coming round to a policy of treating MS aggressively at the outset, to avoid accumulating disabling symptoms. However, too many are happy to adopt a conservative approach with first line treatments and a wait and see policy.

DMTs are strong medications and do come with risks. But, these are known risks, which can be avoided by monitoring. MS comes with risks too.


cheshirecat
10 months ago

@stumbler , the things you wrote are the only reason why I am planning to take Plegridy. I understand your point and agree that is much better to prevent as much as I can, and it’s not that much, as this DMTs are not a cure.
The monitoring they do makes me feel a little more confident, it’s true, but even with that I chose the less aggressive medication. I will also do the Vitamine D Protocol. My Neuro accepted that I’ll have this “parallel” treatment, she’s ok with that. And the clinic that performs the treatment also does the monitoring with blood/urine tests, because huge amounts of D vitamine also can bring some side effects (not so heavy as the ones of MS drugs but still some values should be monitored).

MS also comes with risks. So true. But these ones I didn’t chose. I didn’t chose to have MS, like you and all of us here didn’t (we’re not crazy! 🙂 ). The medications… I can chose. And their risks are not the same, there are the more aggressive and the less ones. That’s why I’m sooooo worried and picky about this matter.

I noticed (reading profiles) that some people here do no treatment at all. Why is that? Does the so called “benign MS” really exist? I’m so confused!

Sorry to insist and make so many questions, but I see you as a really really well informed person. The minute I first read you, I got that feeling. And you are present in every threads, helping and providing excellent information, links, and last but not least – a wonderful sense of humor!

Thank you Stumbler!


stumbler
10 months ago

@cheshirecat , adopting a DMT is a lot like fitting brakes to your car, it won’t stop you having an accident, but it will slow you down to restrict the damage. And, adopting a DMT gives you access to regular monitoring, so regular MOTs.

The more aggressive the DMT, the more effective it is

DMTs come with known, quantifiable risks, which can be mitigated with monitoring. MS has unpredictable risks – you just don’t know when, what severity and what residual damage will be left.

Some MSers do choose to adopt a more natural approach, relying on diet and/or other complementary therapies. These approaches haven’t been subject to the close examination of properly conducted clinical trials, so their effectiveness is only anecdotal.

But, as with all things MS, it’s different for each of us. What works for one, won’t work for another.

Life generally is full of risks. We just have to weigh up the pros and cons and make our decisions based on what risk we’re happy taking. 😉


cheshirecat
9 months ago

@stumbler , thanks again for explaining things so well. Gosh, you should be an MS adviser, or something like that, cause you are really helpful!

I will start Plegridy on the 11th, next thursday, and hope that taking it I will be fitting breaks to my car. I know it’s not the most aggressive, but it has less risks than others, and I prefer it like this. I guess I’m a “chicken” taking risks… 😀

Sorry for taking so long to reply (and read), but I’ve been supporting my mom who has just discovered a breast cancer. Her prognosis is good and she’s ok, considering the situation, but I have been too busy about all her medical appointments and helping her preparing for the surgery. Almost forgot about me.

Thank you my friend. Take care xx

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