I don’t know what treatments were available for secondary progressive when you were diagnosed many years ago but I believe there are some new ones and some in the pipeline, so yes, push your Neurologist on treatment!
Can you remember what side effects he/she thought would be worse than simply letting MS take its course? Sounds weird to me and I hope that no medic these days would deter patients from getting any treatment!
Just for info but Curly’s MS has progressed to Secondary Progressive and by the time MS gets to that stage there are few treatments! Fortunately, treatments for Relapsing Remitting ( which you are likely to have) reduce the development of the disease and hopefully stop it developing into Secondary Progressive the main feature of which is just continual progression- worsening of disabilities and symptoms.
I was diagnosed with spms straight away in 2012 but probably had it a lot earlier than that. The neurologist who did not want to put me on dmt then did not say what the side effects would be but did just say they could be worse than what my ms was at the time. Everyone is different and has different problems if I had the chance to take dmt then I probably would. I am saying this because my body is failing me now eg pain,walking,falls etc. Maybe it would of helped if I was offered them then. I am on the waiting list to go on the trial for Sativex as most pain relief I have tried have bad side effects or they don’t work. Anyway I will see what my neurologist says this month.
I want to get off my treatment and also try Kesimpta and pray that it indeed doesn’t have side effects for me either. At least its once a month.
I’m currently on Brabio and 3 times a week is way too much. I get the injection site issues. It hurts and i can’t move for at least an hour and then it’s all hard…in 1 month I’m running out of space to inject!
Hi! I was in your shoes recently. My MS had very mild symptoms for years (since 2019) and the doctor didn’t diagnose me until last year. When he started mentioning treatment, i refused too because my MS wasn’t impacting my life at all…
Eventually people talked me into treatment and as the doctor had offered only 2 options initially i chose one, he said had no side effects…I’ve been on the treatment precisely a month now and i wish i hadn’t started. I don’t want to scare you as everyone’s MS and also experience with the treatments is different…but I’m currently living in hell which i wouldn’t wish on anyone.
I’d say, have a look at the list of the treatments thats available here on MS Society website see which seems best for you "on paper " speak to your doctor and try… what i realise is that with this there is no guarantee and you can’t just rely on someone’s good experience. You won’t know how you tolerate or don’t a treatment until you try.
All the best to you!
Thank you for your message and sorry to hear that you are have such a bad experience with the treatment.
I really appreciate you sharing your journey as it helps to have various points of view.
I have an appointment with the MS nurse in a couple of weeks to discuss treatment options so your message is very important for me read.
Thank you again and keep in touch about your progress.
This is from the professor of neurology at Barts and might be interesting.
Gavinitis or flipping the pyramid - by Gavin Giovannoni (substack.com)
Weirdly, I think the idea that I am in control and nobody can force me to do or take anything made me more receptive to treatments as my mindset made me feel more in control- if that makes sense?
In the last 7 years, I have gone with what my consultant recommended and started with intense treatments such as tysabri and Mavenclad, and am currently transitioning over to a more gentle self injectable treatment.
As long as I voice my concerns and priorities such as I was concerned with being young about my fertility, my consultants have taken it into account and I trust them. I know not everybody prefers this, but I get tired of having to centre my life about ms research so trust them to take care of it as they are experts in the field.
I wish you luck on your treatment journey!
Betty x
Certainly! Decision-making on treatment involves a thoughtful process that takes into account various factors. Here are some key considerations to guide the decision-making process:
Ultimately, the decision-making process should be a collaborative effort between the patient and healthcare professionals, ensuring that the chosen treatment aligns with the patient’s values, preferences, and overall well-being
Are you aware this is a UK site?
Hi Everyone
I’m so pleased I saw this post as I am struggling to decide what I should do regarding a possible trial.
Diagnosed MS April 22 then PPMS September 22… so still quite new (and scared) on this MS lark!!
I had the first all day assessment for Olicrezumab (??) in July 23 but after a routine mammogram i was diagnosed with Breast Cancer (BC) shortly afterwards therefore couldn’t proceed. I’ve now completed my treatment and all is well thankfully!!
Skip forward to today, I have asked if I can go back onto the trial and await a call re that, but my neurologist has given me info on the Octopus trial and I don’t know which might be better (if I should be accepted that is).
I know I am steadily deteriorating in mobility, strength, brain fog etc etc, and with the BC I had no hesitation whatsoever in doing everything I could to beat the beggar…. In my head (rightly or wrongly) BC was hopefully a short term thing for me ie months not years, so it was doable but MS is scary and I’m struggling I think to get my head around things.
I want to feel the same positivity I did over BC but don’t, so any guidance from you guys I would totally appreciate…. Do I just sign up for everything and decide once I’m given the green light, I seem to have lost a bit of confidence in this!!
Help.
Hi Blinking. I don’t have PPMS so I’m not familiar with treatments and trials but I think I’m correct in what is say below.
You mention that you were being assessed for treatment Ocrelizumab (Ocrevus)? As I understand it this is now licensed across the UK for treatment of PPMS (and RRMS) and isn’t under trial. Again, from what I understand , there are a number of criteria to meet and If I were you I would go back to getting assessed, do this quickly and, if the neurologist says you meet the criteria then definitely start as soon as possible.
The Octopus trial is interesting. As I understand it then, if you join the trial you would still continue with the Ocrevus but also take one of several pills. One of these is a Placebo i.e something like a totally inactive powder. Another is Alpha Lipoic Acid (ALA) which I know well! I saw ages ago that ALA might be helpful in dealing with MS so I went out and bought some! ALA tablets are widely available and I get mine from our local Holland and Barret shop (other outlets are available 
).
The other tablet in the trial is Metformin which is used to treat Type 2 Diabetes but might also be useful with PPMS. I think Metformin is only available on prescription.
So, if you join the trial you might be give a pill of something totally inactive, an ALA tablet or a Metformin tablet.
What would I do. Well most definitely go back to see if you can get Ocrelizumab/Ocrevus.
Would I join Octopus as well - hmmm that’s a difficult one. At present it looks as if the Trial covers only ALA and Metformin but other possible treatments might be included in future. So for the time being and on balance I think I would continue buying my ALA tablets simply because on the Trial I might be taking nothing but a totally inactive powder ( and i note that anyone joining the trial is asked to stop taking any ALA that they already use - I guess that this is because this could mess up the results of the trial).
Having said the above, out of my own interest I’m going to find out what I can about Metformin as a possible treatment for PPMS and I suppose that if it looked as it could be highly effective as a treatment for PPMS then I would join octopus on the chance that I would be in the group that is given Metformin.
Long reply and I hope I haven’t confused you, but yes definitely go back and see if you can start taking Ocrelizumab!
Hank_Dogs
Oh wow I thank you very much your response. It makes absolute sense and has helped me gain focus which is brilliant, cheers !
I will speak with the team and see if I can get assessed and signed up for the Ocrevus (Ocrelizmab).
You are correct in that the Octopus trial does include Metformin and the ALA (unless on the control group), none of which I’m aware of. Again, being quite new to it all, I wasn’t aware I could purchase it.
You have helped me get my head back in gear and realistically I guess I’ve nothing to lose and possibly a fair bit to gain!!
Thanks again and I wish you well!!
I’ve been taking ALA for ages now. No idea if it’s making any long term difference to the MS but it’s fairly cheap and I haven’t noticed any side effects at all.
All the best
Hi,
So no adverse side effects I’m assuming (?).
I might just buy some to try anyway, if you don’t mind me asking…. do you recommend/prefer any particular brand
Thanks again
Absolutely no adverse side effects that I have been aware of.
I just get Holland And Barrett’s at £15 for 60 capsules of 100 mg, taken 1 a day.
Hi Hank_Dogs
Excellent thanks for confirming that. Nothing to lose then I’d say.
Cheers, much appreciated!!
I have rrms so am not that familiar with PPMS. It might be worth doing some research and see how successful Ocrevus (Ocrelizmab) is for PPMS at reducing damage. Also maybe look at putting your name down for the trial as it may take ages to be excepted? You can always change your mind. In conversation with my neurologist at UCLH today she said they were having some good results from the trial. Good luck and be proactive if you can.
Hi, Hope you are well. Just to let you know my neurologist want to put me on Fentanyl as he said I need to keep moving and this will help otherwise it will only get worse for me. Not sure what to do as that is a very strong drug even he cannot prescribe it I have to see the pain clinic. Don’t think I have much choice.
Hiii! How are you getting on? You should’ve had your appointment with the MS nurse… did you decide on treatment?
Im still on Brabio but being put forward for Kesimpta as per my request. Don’t know how far they are with that but there’s a waiting list for up to 12 months… the latest development is that I’ve had continuous headaches for around a week…not sure if it’s a side effect which has come out of Brabio… did some tests today at the hospital and they were fine.
I’ve never had a headache in my life before so this isn’t great at all… if it’s a side effect, i want off Brabio even more!