Hi, I’ve just had a phone call from my MS nurse saying that my white blood count has been continually dropping since I started Plegridy so she wants me to stop injecting. I’d been on Avonex for 5 years before starting Plegridy which apparently only slightly upset my blood count. The thing that’s worrying me is she said that after having ms for 15 years I had maybe moved into the secondary phase. I’ve always thought secondary ms was worse than relapses remitting? She didn’t give that impression on the phone, she was more saying it was because my ms wasn’t active at the moment? Does this make sense to anyone, is secondary worse than rrms. She’s a lovely nurse but she does tend to get herself on a chain of thought and you can’t get a word in. I’ve to get bloods done again once I’ve been off treatment for 2 months so I’ll see what she says then.
Hi Lucy. I was on Plegridy and loved it. It messed up my blood too. I thought it was primary progressive before secondary progressive? Phone her back. She needs to put your mind at rest. Maybe even email if she is a chatterbox 
then you have it in writing xx
No, primary progressive does not lead to secondary progressive.
Relapsing/remitting may lead to Secondary Progressive.
However someone with PPMS and someone with SPMS are in exactly the same situation looking to the future i.e. they’re not supposed to experience an improvement.
That is what the neuros tell us - for THEIR convenience I reckon.
I know of two people dx’d with SPMS who have experienced periods when their mobility has improved.
Good thinking, an email probably would be a fair better way of getting my questions in. Why didn’t I think of that!!
Thanks for that, I was that shocked at her telling me to stop injecting that I didn’t take in everything she said but like you say it’ll not matter what it’s called it is what it is. I don’t feel that things are getting worse but maybe the neuros know different. I’ve felt before I only get told the bare minimum.
Lucy Annie my head is mince. I need to read stuff to let it sink in. I.e read it 4 times haha. I hope you get some info soon to put your mind at ease.
It’s not just me then, that’s exactly what my head is like, lol
no, the neuros don’t know better than us. They are often pre-occupied with labelling us with labels that are far from accurate.
Trust your own feelings and instincts!
Hi, I have SPMS, I was diagnosed straight in as that, no RRMS for me. My understanding is that some people with rrms will go on to become spms and if they do DMD’s are no good for them. SPMS and PPMS are both progressive forms of the condition, we don’t as a rule have relapses, I know SP can have periods of activity, which I do, I’m not sure if PP do, however SP and PP are both in the same boat, ie we progress, my nurse said that as a rule people with PP are generally diagnosed with that straight away. I would think and please do get back to your nurse that after the years you’ve had it you could and I say could have SP, but if I were you I’d fight for the DMD’s, bacsue 2 ladies that I know, who were RR, took DMD’s for years and then told to come off then, well their MS suffered, so try and stay on 1, if you can, not trying to scare, just passing onwhat I know, good luck, x x
Hello Lucy
If your white blood cells have been depleted by a DMD, then you have to stop that drug. No question about that. Your white blood cells include lymphocytes (which protect against most viruses) and neutrophils (which fight against infections), amongst other type of WBC. That doesn’t mean you can’t go on another drug once your blood has been shown to have recovered to ‘normal’ levels.
The question about RRMS becoming SPMS is one that comes around over and over. It’s a bit of a curse for people with RR, after a few years, you can’t stop thinking that it’s become SP. I thought that again and again then kept having relapses that remitted so was shown to still be RR!
But then after I’d had side effects that meant I had to stop DMDs and then stayed relapse free, but becoming slowly more disabled, it was agreed, I was now secondary progressive. And then I had a relapse, that completely remitted very quickly after steroids. It was fortuitous that the relapse began on a day I had an MRI (already planned). This showed clearly the disease activity on that day.
Later that year (2018), I had another relapse. So, it was then declared that I had Progressive Relapsing MS. So was just about eligible for Copaxone. Then I had bad skin reaction. So that was ruled out and I stopped it. No more DMDs for me!
But the chances are, you are still RRMS, have your blood tested in a couple of months, hopefully it will be back to normal range and you can start another drug. Maybe one that’s more effective than beta interferon 1a? Although Tecfidera may be ruled out, as that can also deplete white blood cells (lymphocytes).
Best of luck.
Sue
Hi and thank you for your input, don’t worry about scaring me, I’m just glad for other people’s experiences and knowledge.
Thank you Sue. I was just in a panic when she phoned and said my white blood count was getting really low, I was thinking nows not the time to have no immune system!!
I have had RRMS for 20+ years and I would share your perplexity.
The ‘typically goes progressive after 15 years’ line is just not helpful and, I think, not right either. At best, it is a rough, population-level generalisation. Even if it used to be true (and I do not know whether it ever was) I doubt whether it still is, not we have more effective DMDs with the potential to delay the drift to SP. In any case, at individual level, the ‘15 years’ thing always was useless and still is. The stage of your disease course can only be assessed by a close individual look at you and how your MS is behaving. If you have been so assessed, and you are showing the signs of gradual loss of function over time that can indicate SP, then fair enough (although many people continue on a DMD long after that point is reached). But if you have not been properly assessed, the notion that someone might casually and lazily take you off the DMD that is keeping you well without even bothering to consider properly what stage your MS is at … Well, you can guess how I would feel about that. I expect you feel that way too. Please don’t let anyone do anything until you are satisfied that there has been a proper assessment of your MS stage and your DMD needs now and in the future.
Alison
I’m not saying that your blood results aren’t concerning, I’m just saying that they are not a good enough reason on their own to conveniently declare you SP - the two issues are not remotely related! If Plegridy isn’t suiting, you can try something else.
Alison
Thanks Alison, I’ll go the two months without any dmds, and hopefully my bloods will recover a bit, but I’ll be better prepared after that for questioning what happens after that. But thanks for your input, it’s very helpful.