@Bhep75

Last reply

Bhep75

Should I start treatment now or wait?

I have recently been diagnosed with mild MS having had two separate episodes in the last two years but the first of the 3 being 12 years ago. I have been offered to start medication but I am a bit apprehensive as I am symptom free atm and feel that I should wait to see if there will be another episode. I will get a follow up MRI in October (a year after last one) to see if there are any changes in the brain. What do you think I should do? Hold of the medication or start it now?

lauraforde

@lauraforde

I was like you a couple of years ago, but a few months into treatment realised it made a difference and I perhaps wasn't as well as I thought I was. I also looked upon the treatment as preventative, keeping the wolf from the door.

1

Bhep75

@Bhep75

I just feel because it's has been diagnosed as mild. The side effects outway the symptoms. But it's always good to get others perspective on it

lauraforde

@lauraforde

I didn't find the side effects too troublesome. Was worth it for me but is not an easy decision

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Spencerd

@Spencerd

Biggest mistake of my life not going on medication 9 years ago, I'm now partially disabled and it's not fun 😭

3

kirsten0899

@kirsten0899

I had this issues as well. I was extremely afraid of medications and the side effects they might have. For me personally, I chose to take medications as multiple sclerosis doesn't take a break, but merely gives the illusion of benign symptoms. It is constantly progressing, but the more I can do to stop it now, the better. You do whatever works well for you and best of luck!

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Subpoenaqueen

@Subpoenaqueen

How I look at it ... like a seat belt you wear it in case something happens ... you don't put it on after the accident . I struggled with to medicate or not ... in the end i put the seat belt on

4

Bhep75

@Bhep75

Thanks for the comments. My next question would be is what medication would you recommend.

AndreaG

@AndreaG

@Bhep75 There is nothing mild about MS. I was the same as you, large gap between relapses, then two relapses within two years. I was told I have the lowest form of MS, with the lowest form of symptoms. The damage has been done, there is no going back, however the drugs are to prevent (hopefully) any more damage happening. Treatment is up to you. I was put on Avonex (interferon B) then moved onto Fingolimod (Gilenya). Speak to your MS healthcare professionals. They are best placed to advise you. Also, check out Dr Aaron Boster who can be found on Youtube. He gives some good advice about those hesitant about going onto DMT (disease modifying therapy). Good luck.

3

Henrietta

@Henrietta

@Bhep75 I was diagnosed last year aged 56, but my neuro says I’ve actually had MS for 19 years - ever since I had optic neuritis. His prognosis, with caveats, is that it will take a mild course as I am relatively unaffected by it. He then offered me a choice between Tecfidera or Aubagio which I was surprised by as I wasn’t expecting a DMD at all. I decided after reading posts here, watching most of Aaron Boster’s many short and informative videos on YouTube and looking at the OMS (Overcoming MS) website, that it was a good idea to take the drug. I chose Aubagio and have been on it since September with no discernible side effects. Another thing which convinced me was my neuro explaining that as we age our ability to bounce back from silent / in the background activity lessens so he was keen for me to start a DMD. Hope that helps.

3

Bhep75

@Bhep75

@henrietta thanks. I'm still in limbo really. I'm aiming for October when I'll get another MRI and make a decision then I think 😕🤔

1

Vickyms

@Vickyms

I wish I'd been offered drugs earlier. I was diagnosed 6 years ago after years of feeling like something was wrong but not being able to put my finger on what. I was told it was mild I might never have another relapse and continued to feel like I was in a gradual decline. After my consultant told me I would probably never have another MRI I changed hospitals. And everything changed they took me seriously and after an MRI showed that my disease was active I have just started on Tyasbri, a high level DMT, totally missing out the low level ones. Maybe if my initial doctor had listened I wouldn't need to be in such a strong drug yet.

Bhep75

@Bhep75

@vicyms I was discharged from the neurology dept in 2019 after an episode of numbness from my right arm up to my shoulder in 2018. Had MRI lumbar puncture and they said I didn't have MS. Then last October I had vision problems and was referred for another MRI via the eye clinic as I told them about the MS investigations previous. New lesions and a diagnosis of MS although mild. 😮

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Spencerd

@Spencerd

I've been stable on tecfedira and during global pandemic, it's been quite safe I believe. Next year I'm thinking ocrevus is good 😊

Vixen

@Vixen

@bhep75, whatever symptoms you have, mild or significant, the point of DMDs is to slow down the progression of the disease and, if you do have a relapse, it is thought to limit the effects. As you know,the disease is progressive. Some people choose not to take meds, preferring a more naturalistic or alternative approach. I was 50 when diagnosed and, being (statistically) well into the second half of my life, I felt: who wouldn't want to slow the progression of this thing down? I have been on Tecfidera for 4 years. The disease is still chipping away, as it will, but I have had no new lesions or significant relapses in 4 years..... :-)

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Clary

@Clary

Hi @Bhep75 this sounds like my thoughts. I have been offered Avonex and I am thinking I will wait until my next MRI. I don’t want to get worse, but I can’t decide. I really don’t want muscle injections once a week or flu like symptoms. It doesn’t seem worth it for only 30% effectiveness 🤷‍♀️. Then again I don’t want to risk becoming worse because I didn’t take it. I wish I had a crystal ball. 🤔

Bhep75

@Bhep75

@clary it's the side effects that scare me the most but my husband said there is side effects with any drugs and that if you went by side effects alone you wouldn't take any. I am swaying now towards starting medication although I'm still waiting to hear from the MS nurses. I think with what people are commenting of the MS drugs it's trial and error. Good luck X

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Clary

@Clary

Hi @Bhep75, just to say I have ordered and received some great information from the MS trust about DMDs. I am reading all this great information and my mind is changing. Perhaps with support I could start Avonex? The booklet is DIsease Modifying Drugs - A guide to treatment for RRMS. Hope this is helpful 👍

Saab

@Saab

I am in a similar situation, I have an appointment to see the ms nurse in February about DMT's and have the booklet with all the information regarding the drugs. I am 44 but swaying towards starting DMT's. As scary as it seems the pros seem to outweigh the cons when thinking of delaying more damage to the body

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BULLMAN

@BULLMAN

I am 17 years dx and have lots of experience from MS. If you own a home with a mortgage see if you have critical illness cover. It may cover MS. Depending on how your MS affects u, you may be entitled to PIP. If not now always be aware. Access to work may be able to help with getting to your job. Your local jobcentre may have a ATW advisor.

embroideress

@embroideress

I am surprised your doctor used the word "mild" as MS is constantly working behind the scenes. I've had two relapses separated by 40 years and I began a DMT at 57, as my neurologist recommended. She has never qualified it as a mild case. I'm taking Avonex, weekly injection. I don't like the side effects, but I would like having another relapse even less.

1

mitch73

@mitch73

When I was first diagnosed 15-16 years ago I refused medication and said I would only take it if I had I relapse which I did about 9-12 months later.I didn't want to take the drugs because as amazing as they are they are a toxic chemical.I have been on meds since then apart from a break of just over a year when I swapped medication. This is just my personal opinion so please make up you own mind with your decision.Medication definitely has its place but there is so much more you can also do to compliment it.Hard physical exercise or anything if your able, good quality sleep, good diet and low amounts of alcohol and the big one is reducing your stress levels.For me that is the one that has made a big difference although Ive never been a particular stressy person.

Bhep75

@Bhep75

@mitch73 thanks. I am fairly healthy and active anyway so if I can be all that and still have 2 relapses within 2 years I think it's time to start medication. I see that now. Just waiting to hear from MS nurses and what medication is on offer.

Michelle_Donovan

@Michelle_Donovan

I also have RRMS and began treatment right away. My symptoms were such that although I was hospitalized, I had outpatient therapy for walking and writing. It's for that reason that I needed therapy in addition to medication. You're choices are yours. Circumstances and medical advice need to be considered. Most importantly make sure you have a strong support system. Good luck with whatever you decide

Michelle_Donovan

@Michelle_Donovan

@Bhep75 Medication Choices have to be determined by you. The neurologist and MS nurse can give you information on all that's available but, only you can choose what's best for you. Good luck with the MS journey :-)

802strong

@802strong

@Bhep75 I see you are in the Highlands. Whatever you do, start supplementing with Vitamin D now. Your GP can check your levels (it cost the NHS £6 to run a vitamin D panel in England) There are many studies associating Scotland with MS due to Vitamin D links. This has been established well in the US, Oz and NZ but not so much in the UK. I would encourage you to supplement your children too. I am on Tecfidera which was a bit rough at first but has settled now. The NHS has very strict criteria of prescribing MS drugs, you won't get much choice it depends on the frequency of flares and progression. If offered Tecfidera I would hop at it - a good track record of limiting progression and so much better than the shots. Your Neuro nurse can discuss the pros and cons of meds, but the availability in the UK is less than the US and continent.

802strong

@802strong

@Bhep75 I see you are in the Highlands. Whatever you do, start supplementing with Vitamin D now. Your GP can check your levels (it cost the NHS £6 to run a vitamin D panel in England) There are many studies associating Scotland with MS due to Vitamin D deficiency. This has been established well in the US, Oz and NZ but not so much in the UK. I would encourage you to supplement your children too. I am on Tecfidera which was a bit rough at first but has settled now. The NHS has very strict criteria of prescribing MS drugs, you won't get much choice it depends on the frequency of flares and progression. If offered Tecfidera (which seems to have slightly more liberal criteria in Scotland) I would hop at it - a good track record of limiting progression and so much better than the shots. Your Neuro nurse can discuss the pros and cons of meds, but the availability in the UK is less than the US and continent. I see there is an OMS circle in Inverness, you may be too far North to attend it but if you're interested in looking into it (vitamin D supplementation. exercise, stress management/meditation, and diet of vegan plus fish) and want to connect with folk (virtually and perhaps eventually) I know there are groups in Scotland that have more remote members who Zoom in (and of course, all groups are virtual now) OMS is not medication adverse - they encourage each indidual to pursue health with or without meds as they see fit.

802strong

@802strong

@Bhep you can get a free copy of Dr George Jeniliek's book Overcoming Multiple Sclerosis here: https://overcomingms.org/resources/overcoming-multiple-sclerosis-book No strings attached. It's a good resource for considering other options alongside/instead of meds

Jduffy

@Jduffy

You may feel fine now, but your MS can flare up anytime. My suggestion is to be proactive about this disease. I was diagnosed 25 years ago. For the first 19 years of my illness, you would not know I had MS by looking at me. I was able to play basketball and go for a 2 mile jog everyday. The only symptoms I had was strictly cognitive and being able to multi task at work. For the last 6-7 years my symptoms progressed into my lower extremities. My lesions were now in my spinal column. I can no longer play sports. I can only walk about 1/2 mile before I fatigue. So I would start taking a medicine.

Bhep75

@Bhep75

@802strong Thanks, the neurologist will be contacting my GP to start me on Vitamin D. A lot have commented on Tecfidera saying that's what their on. Still waiting to hear from a MS nurse only had my consultation on Monday with neurologist so will hopefully hear soon. X

Chrissywhatidid

@Chrissywhatidid

Hi! I was pretty freaked out by the thought of the DMTs and deciding felt really, really hard. I ended up opting for Rituxan (which is like the old form of Ocrevus). The advantage is that you only have to get the meds every 6 months, but it wipes out part of your immune system which is currently complicating the COVID vaccine process. So maybe the docs can advise around timing the treatment If that's one of the ones they offer.