Hello everyone,
I hope you are all keeping well and cool in this heat. I haven't been on here for a while, the last time was around the time I was going to start Brabio in January. Briefly, I was taken off of Tecfidera after having a very low lymphocyte count, prior to that I had been on Avonex for 10 years. It was suggested that I try Brabio, I wasn't keen but agreed. Unfortunately I could not face the really horrendous sounding side-effects - particularly the shortness of breath and increased heart-rate. I was sat at home with the nurse for over an hour trying to gather up courage but just felt unable to have the injection. Now I have been offered Avonex again, or Plegridy as an alternative. I really don't fancy either to be honest, and to me they feel like a backward step. But I have been told that I am 'doing well', a recent MRI showed no new lesions and unbelievably, some old lesions had healed - and that's after taking nothing for 9 months. However I feel I should be taking something, and maybe Avonex or Plegridy might be better than nothing. Have any of you experience of taking Avonex and switching to Plegridy, or even just taking Plegridy? I am frightened of the unknown effects of Plegridy, but feel a fortnightly injection might be a better option than a weekly one. If I can gather my courage, that is!
Thank you very much!
Best wishes,
Catherine
Good afternoon everyone,
I haven't been here for a while, I hope you are all doing okay. I wondered if anyone here has changed from avonex to plegridy - and what their experience has been? I have been on avonex for 10 years but because I am taking methotrexate for rheumatoid arthritis, I can't take any of the oral DMT's. I thought plegridy might be a better option. Any thoughts?
Many thanks,
Catherine
Hi there
I am writing this post after over 20 years of being worried about getting MS having been around my beloved Mum who has had it since I was 5 (I am now 33).
The reason I am writing is I just need some advice please. As a child I really suffered from anxiety, clearly related to my Mum being ill and in pain and my parent's relationship very slowly breaking down. This would come and go, but included a lot of missing school etc. When I was 22-25 it really came to a head and I suffered terrible panic disorder. After months of therapy, it went away and I was able to live my life again. I felt like a new person.
BUT, last year my father left my Mum which was a huge strain onme and more recently my mother has been very ill and in hospital for weeks after a bad relapse. I got extremely stressed travelling to and from the hospital every day and also trying to sort funding, hurry up the social services and hospital nurses that were so overstretched Mum's care was appalling (not their fault, but the NHS cuts) and then I had to sort a new care home for her that would look after her properly with proper nursing.
Anyway, for the past few months I have been having some very scary symptoms and I really want to believe that they are anxiety related and that my nervous system has been under so much stress that it isn't computing properly and me telling myself my worst fear, but I also need to be sensible and realise that my chances of getting MS are higher than the norm having an immediate relative with it. And I suppose I have been thinking about it all my life and I am sure that must have a long lasting effect on people.
I would say that I am experiencing a lot of symptoms all at once, I am not sure if this is a characteristic of MS. I have spent my whole life not reading about the disease or symptoms, only being around my Mum (lifting her, putting her to bed, sorting district nurse appointments constantly, caring for her during two trials she did years ago (which didn't work. Again hugely stressful etc etc) - and I think that reading about it all now would send me off the rails!
My symptoms include tingling in left hand and right leg, headaches, heavy feeling leg that is stiff when I sit down for long periods of time, strained feeling in eyes (recent eye test ok though) constant painful neck (helped by Osteo), light feeling in arm, chest pains, itchy feeling as if bugs crawling on my legs when I lie in bed...
The doctor has checked my blood and all was fine, checked my reflexes and everything seemed OK. I do think I should be referred to a Neuro but I am TERRIFIED.
I have had too much stress and worry and all my friends say I cope so well, but it is just a front, I don't think I can go through with an MRI and the worry of waiting to hear what I think I have expected all my life...to get MS like my Mum.
So if any of you had similar experience, or have any advice, or indeed know anyone that suffered horrible anxiety and relatives with MS that led them to believe in the worst, then I would like to hear from you.
Thanks for reading,
Alice (33)
Hi All,
I made a website to help me keep track of my injections in the hope that they'd hurt less due to not injecting in hidden bruised areas (and it does!). I've like to share it with fellow MSers (and others if it's useful to them!).
I made it because there wasn't an app that I could use to take photos of my injection areas and track injection sites, (and add 'landmarks' like blemishes!) and have been using it since August last year and am very pleased with it!
Have a look, I'd love some feedback if you have the time? Injection Tracker for MSers
Thank you,
Jon
Hi all,
Well the first injection was done yesterday at 2:30pm in the hospital. I thought the pen had malfunctioned as i didnt feel a thing but it worked fine.
My legs started hurting a lot about 4 hours after the injection and by about 8pm were really painful with a few aches down the shoulders and arms but the chills started in about 9ish alternating with hot spells. I did however have a cold and a sore throat before the injection and the nurse said that this could make the symptoms a bit worse so until i inject when i am well i wont get a true reading of side effects. My head is a bit thick this morning but that i think is due to the cold i have. My legs are still a bit achy but if thats all the side effects i get i will be more than happy.
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If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
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