Hi, I’m new to the forum and this is my first post. I’ve had RRMS for 25 years and for the last couple of years it has become much more active and I’ve had several relapses with lots of new symptoms. Does anyone else suffer with breathlessness during a relapse? I can’t even walk across the room without being totally puffed out. Is this ‘normal’ for ms?
I’ve had two disabling relapses in the four years that I’ve been diagnosed and they both left me breathless. The reason is that the slightest thing tires me out very quickly. This latest relapse wasn’t nearly so bad and I put that down to the Rebif and it hasn’t lasted as long as the previous one but I did get very breathless whenever I tried to walk anywhere or go upstairs.
The last one four years ago before I was on Rebif left me breathless even after a shower and I used to have another sleep straight after!
Hope you are feeling better soon. I had steroids two weeks ago and am making good progress now.
PS Welcome to the forum
Hi Tracey, Thank you for your message, and welcome, it’s made me less worried now I hear someone else has had the same thing! Do you mind if I ask how long you have been on Rebif? I have a meeting with my ms nurse in April to talk about all the dmd options and I’m leaning towards Rebif after looking on the ms decisions website. It’s all a bit scary considering I’ve had ms for 25 years! Jenni x
Just wanted to say welcome to the forum, we are a happy large band of people only to pleased to answer any questions you may have. Trouble with this question is I only seem to get breathless when I undress!!!
I’ve been on Rebif since August 2009. I had two significant relapses that led to diagnosis. The first, in December 2008, affected speech and my hands and the second left me barely able to walk, numb from the waist down and I had the hug. That was in March 2009. I was very keen to start on DMDs as I didn’t want to keep relapsing at that rate. I chose Rebif as Copaxone mentioned breathlessness as one of the side effects and I’m asthmatic anyway and like you was out of puff with the relapse so I didn’t want to risk such a scary side effect. I didn’t want to inject every day either. I didn’t want the weekly injection as the needle was too big (I’m a wimp) so I opted for Rebif.
I did have the flu type side effects at first. Headache and achiness but as I was still recovering from the relapse and my legs were fatigued all the time, it was hard to tell what was the Rebif and what was the MS. I took ibuprofen and paracetomol when I did the injections at bedtime (so I could sleep through the worst of it) and until lunchtime the next day when the headache wore off. This kept the side effects to the minimum. By the time I went up to the maximum dose (I think after 12 weeks) I had got used to the Rebif and going up a dose didn’t make a difference. I do get red blotches where I do the injections but they are not painful and they help me to remember where I last injected I was nervous about self injecting but the nurse trained me and I did my first one at the hospital with the nurse’s assistance. Then I wondered what I had been so worried about, and now it is as normal as cleaning my teeth. I think some people do their first injection at home with their nurse.
Hope this helps, if there is anything I have missed, just ask
Welcome to the site, there are some lovely knowledgeable people on here who can support you when needed and you can support them too with your knowledge.
Although I am now classed a SPMS but I still have relapses! I think the Neurologists move you over from RRMS to SPMS because they don’t want to prescribe DMDs - I’m a cynical critical thinker. Anyway when I get relapses I am severely affected by suppressed breathing and it is frightening. I go to HBOT weekly now and haven’t suffered with breathlessness as much. I think it all depends on where your lessons are located.
Best wishes, Mary
Hello again, thank you for your info on Rebif Tracey, it sounds as though it is helping with your relapses, so that is really great. I don’t think you’re a wimp about the needle, that’s why I chose Rebif, i liked the idea of the rebismart! Ive never had an mri Mary, so I dont know where my lesions are. I did ask my neurologist if it was worth me having one about two years ago but he said it wouldn’t tell him anything as I’ve had ms for so long! I guess if I had been given one 25 years ago they could say why my ms has been so active just recently? Jenni x
hi there jenni, welcome to the forum, all i can say is that its great here, theres loads of really nice n helpful people here as you have found out n i hope you make alot of friends here
hi jenni, welcome to the site, there are many knowleagable people on this site that are a mine of information, it’s been priceless for me and I am sure you will find it priceless too.
Thanks everyone! :0)