Any advise?
Hi I’m Tracey I’m not sure of my diagnosis I have been RR since 1998 but in the last few years I’m no longer seeing relapses however small, I take Rebif which I want to come off now, It was mentioned I’m early pregressive but still not sure if that means secondsry, I think I need to have a frank discussion with my neurologist next time I go. I get a lot of bladder infections but I’m wondering if this is linked to the amount of Pregabalin I’m taking, producing a false positive of high nitrites. I drink 1.5 litres a day but I just can’t seem to get to 2 litres no matter how much I try as I need to stay by a toilet. I’m a possitive person in general, I know we all have similar problems so I was wondering is there any advise out there? Thanks x
Hi @trcey , the actual variant of MS is not a major issue. It's hard to say whether the Rebif is being successful in holding off any relapse activity or whether you have transitioned to Secondary Progressive MS (SPMS). It all depends on your clinical history, as to whether you actually started as a case of Relapsing Remitting MS (RRMS). This would seem likely, as you were prescribed the Rebif. There are not presently any Disease Modifying Therapies (DMTs) for either Primary Progressive MS (PPMS) or SPMS. There is obviously a desire to ditch the needles, if they are no longer required. But, as you quite rightly said, this needs to be the subject of a discussion with your Neuro. As far as Pregabalin is concerned, it does quote an uncommon side-effect of difficulty with or painful urination, incontinence and a rare side-effect of Kidney failure, reduced urine volume, urinary retention. However, MS itself can cause urine retention, a cause of UTIs and urge incontinence. A chat with your MS Nurse and a referral to continence services may be useful for you. I used to be plagued by UTIs and then my Neuro suggested a supplement, D.Mannose, which was part of a successful clinical trial to reduce the incidence of UTIs. I've been using it now for some time. I wouldn't get caught up on trying to hit 2 litres of fluid. 1.5 litres is adequate. Hope this helps.
Yes that’s a great help Thankyou for replying, I’ll have a good chat as I am due to see my neurologist soon, it’s just I can’t inject my buttocks because both sciatic nerve have been inflamed well over 3 years now injecting my thigh area causes me problems as I need to stand with work I can only manage 5 hours now adays and repeatedly injecting my stomach regardless of the state it looks I keep getting a break down which blisters and scabs. I suppose because I feel it’s not working I just want to stop but you’re right it might be working, i have antibiotics ready but for the last two weeks Iv been drinking to flush out, I do self cath. I think I’m just a bit fed up today with it all. Thanks anyway 😊