Last reply 2 weeks ago
Sildenafil thoughts please

Hello all, I’d like some thoughts from you knowledgable folk plz.
I was diagnosed rrms in September 2017 and have been on tec since March 2019.
I have remained stable, however my most recent MRI last month (delayed from March) has shown 4 new areas of inflammation. I have not had a noticable relapse, although fatigue is definitely worse, and old symptoms I experienced have reappeared. Wet, heavy legs (sensory, not bladder problems) and heavy, prickly arms, the most noticable.
My neuro is suggesting this happened before the tec became effective. This would be before September 2019. I am certain these new symptoms have only been with me only since the early part of this year, but my neuro gives the dmt’s credit for everything positive and doesn’t hear anything different!
So, thinking about what else has changed for me, I was taking sildenafil regularly until November last year. Unfortunately sex is a just lovely memory for me at the moment. I have lost all interest and my partner has her own health problems too.
So, this set my mind working, wondering if there could be any connection…. and lo and behold, a 2013 trial by barts showed a positive relation between ms and sildenafil.
I can’t find any further studies and can’t believe after such positive result, this was not studied further.
Has anyone else had a similar experience, either improvement after taking sildenafil, or decline after stopping it? Has anyone seen any further studies on this?
Also, does the fact I have not had a noticable relapse, just a worsening of previous, could I now be secondary progressive?

Thanks all
Matt

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magnum1
2 weeks ago

So Matt I will take a shot at some kind of answer for you. Lots of MS medications have long lists of side effects. They are not always consistent from one person to the next. Neurologists can be hard to get the right one. You need someone to work with you not just prescribe medications. Disease modifying therapy’s are very different from one MS sufferer to the next. Watch closely for side effects. You have to be your own strongest advocate. Grill your Dr’s hard and make sure you get full answers. As for more lesions showing up on your MRI. Some do not show up as symptoms but none the less your disease is active is what this MRI is telling you. As far as determining whether you are secondary progressive that is hard to determine. Because MS is an incurable disease some Dr’s hesitate to say that you have progressed to that. You have to judge if you are experiencing effects from your last relapse or if you are experiencing new symptoms that remain persistent. I don’t mean to be depressing but ultimately the decision of how you are going to treat your MS will be up to you so information is critical. Best wishes.

Just go for it!!!


b-o-b
2 weeks ago

@mattw Hi,

RRMS and SPMS are not very good concepts to understand MS in 2020.

To my mind, better to think about PIRA (progression independent of relapse activity) and RAW (relapse-associated worsening). Every pwMS is different and basically everyone experiences a combination of PIRA and RAW. Some experience only RAW and no PIRA for a while and are being called RRMS and some others only have PIRA and are called PPMS or SPMS (if they were RRMS before). And a lot of people with ‘RRMS’ experience both RAW and PIRA, from the start.

So basically you can have focal inflammation (which is your case: you have new MRI lesions) but maybe also some PIRA.

What is really important is to do something about it.

First, you need to take care of focal inflammations so if Tec is not good enough (which seems to the case), you really need to change your DMT. Did you have an MRI of rebasline after 6 months of Tec or was it your first one after you begin Tec? When is your next MRI?

Secondly, if you think you experience PIRA, you need a DMT that has an effect on that too. All the DMTs we have in 2020 are not great to fight PIRA (they are good on RAW), but some are better than others: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7281382/

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