@Eliot-S 

Last reply

Eliot-S

Thoughts, experiences, advice wanted, please.

My husband has secondary progressive multiple sclerosis (SPMS). He has tried Tecfidera, Ocrelizumab & Natalizumab. He had terrible reactions to the first two. He became so ill and experienced no benefits. He had no side effects with Natalizumab but didn't feel as though there were any benefits either. This being the case, when COVID hit he decided to stop treatment. His condition has worsened over the past year, but we don't know whether this is due to stopping treatment, disease progression or the legacy of COVID (he tested positive in April this year...and we'd shielded since the end of March 20202, with just two trips out during the gap between the first and second lock-downs, and two home health-care apts.!!!). He's been told that 'maybe' he could qualify for siponimod if his MS is considered to be active. When I last spoke to my husband's neurologist (he felt too ill to talk during his last apt., but as it was over the phone I just put it on speaker) she stated that she considered his MS to be inactive as his last MRI showed no new radiological activity. The scan she was referring to was over a year old though, and it was conducted without contrast, as the radiologist could not get a line in (the MRI before that was without contrast too as that radiologist just pumped his arm full of the stuff). Therefore, her conclusion may well be based on outdated information. Also, I'm pretty sure that 'active' can be diagnosed clinically. As nobody has seen/assessed my husband 'in the flesh', nobody has been able to diagnose his MS as 'active'. Conversely, this must - logically - mean that nobody has been able to diagnose his MS as 'inactive' either. As it cannot be proved that he is ineligible for treatment, surely he must be treated as eligible...what do you guys think? Does anybody have any experience of siponimod, or cladribine/Mavenclad (after the ocrilizumab experience we are both scared of long-lasting treatments). My husband also wants to know what people are doing when they find there are no treatment options, or if they cannot/will not risk taking those treatments that are available. My husband is 61 . We both believe his age is a factor in how he has responded to treatment thus far. Spasticity is becoming a major problem too. He is currently prescribed 15mg per day of baclofen but has independently doubled his dose out of desperation. Does anybody have any suggestions re. spasticity. Does anybody have any experience with fampridine. Does anybody feel that there is a point when it's best to check out of the system, as apts. & scans etc. are just monitoring an illness that is at a stage that is - CURRENTLY - untreatable. Any advice on treating pain and 'utter exhaustion' would also be deeply appreciated. Sorry for the wall of text and inquisition, but we only get to speak to a neurologist once/twice a year, and even then it's simply a fact-gathering exercise, with no benefit to my husband (we're not attacking the neurologist, she is kind. We just feel there is nothing worthwhile on offer). Thank you for reading this. Take care all!
@jamoranto

Geez @Eliot-S the only thing I can say is hang in there for him. Keep on urging him to get on a treatment. I’m grateful for receiving ocrevus myself. Just had my 4hr infusion this week. The benefits of this medication outweighs the risk in my opinion.

@Nicky13

@Eliot...it looks like it's time to think outside the box.....get him on LDN......contact "Dicksons pharmacy in Glasgow"....they are the only ones that will prescribe it in this country.....read up on it and go for it, what have you got to lose.....good luck to you both. 🙏🏼