Hi, I’ve recently been diagnosed with remitting relapsing MS and I’m in the process of deciding what treatment to go for. The problem I have is with the side effects, as I’ve been told most of the drugs cause flu-like symptoms and they are best to be taken maybe in the evening before a day off to get over the worst part when not doing anything.
I work part time (30 hrs a week), as well as doing a degree in psychology at the moment. This means I don’t really get a day off during the week and I am only off every other weekend. I’ve recently been offered a full time position but I am not sure if I should take it due to the treatment.
My questions are: are the symptoms really that bad? Should I take it easy and maybe not go for a full time job giving I go to school 4 times a week?
I would appreciate if somebody living with MS for some time could give me some advice.
I went for Copaxone on the basis that a daily injection was the easiest to build into a morning routine. The minimal side effects were just a secondary benefit. But that is not the only consideration: if you have one of the Interferons, you are eligible for Gilenya some time down the line - with Copaxone you are not.
Whether you should take a full-time job is a question that only you can answer. If it can get you any sort of pension in later life, it could be a good idea. If it could help you get another part time job later on, it could be a good idea.
Dont give up the degree - we can always use another psychologist around here.
I have considered Copaxone as the side effects are not as bad, the only thing that scares me about that is that it can cause depression and anxiety, and also I have had some problems with my thyroid gland in the past and one of the rare side effects that was mentioned was thyroid changes - something I need to discuss further with my MS nurse.
Also I was hoping I could go for one that I don’t have to take every day but I believe I’ll get over the injections after a while.
I will definitely not give up my degree that is not an option for me. I am just worried that if I take the full time job I will have too much to do and won’t be able to keep everything as normal. Being a bit of a workaholic taking the job would be perfect and I would get on a pension scheme with it, although the contributions are rather minimal with the company I work for.
The things you are saying about Gilenya, I am not very sure about what you mean as I am really new in this and there is sooo much information and I feel a bit overwhelmed…is that something I will have to change to after some time? I have been told that my MS might progress into another type in the future…what is the chance of that? Do you have any idea?
I also have RRMS. I currently use Rebif and inject 3 times a week, I have been since April 2011. I find injecting at night and taking parcetemol, an hour or two before injecting helps. I currently am holding down a full-time job, but obviously we are all different.
About 50-60% of people with RRMS go on to become SPMS (secondary progressive MS) after 10-15 years on average I think. Tbh, I wouldn’t worry about that right now: it may not happen! I also wouldn’t worry so much about potential side effects for the same reason: they may not happen. And if they do, they are treatable and/or stop if you stop the injections. I chose Copaxone first because it doesn’t have flu-like side effects. It didn’t interfere with my life at all and kept me pretty much relapse-free for 3.5 years. When I started a relapse my neuro took me off it and I had a hellish year with loads of relapses. I’m now on Rebif. Most people find that the flu effects wear off over time. Some people don’t get any at all. I’ve been unlucky with the side effects, but it hasn’t stopped me from doing things (although I do take quite a lot of paracetamol). But it has stopped all those relapses and I feel infinitely better on it now than I did without it. You would have to be extraordinarily unlucky to be unable to continue your life as normal because of side effects of Copaxone and chances are that any effects from the interferons would be temporary and perfectly manageable with paracetamol and/or ibuprofen. The point Geoff was making about Gilenya is that if you choose Copaxone and it doesn’t stop your relapses, you will have to try an interferon before being allowed Gilenya (which is a more effective DMD reserved for “second line” treatment). If you start on an interferon and it doesn’t stop your relapses you can go straight to Gilenya. Hth. Karen x
Hi Eva I have been on betaferon for over 16 years. The first time I took it, mid afternoon, I had to go to bed during the evening, I have never felt so ill in my life, lol, and I woke up covered in sweat during the night. I got up, changed, took two ibuprofen, went back to bed, felt better in the morning, got up and went to work. That was as bad as it got! The next time I took it (2 days later) I took 2 ibuprofen at the same time, took it just before bed time, and was fine, then took ibuprofen again in the morning, just in case. After a while I decided I might not need the ibuprofen so I didn’t take them any more. As for a full time job, well only you can decide, the others have made good points, I can’t see any reason why you can’t do it if you want. Good luck with whatever you decide. Cheryl:-)
I’m still newish to all this, but learning more every day and with some of the folk on this site with their wealth of experiences and knowledge, coming on here regularly will help.
When I was considering which DMD to go for I went to this website http://www.msdecisions.org.uk/ and it is an excellent source of info.
I am on Copaxone, just started, this is only Day 5!
As you know everyones MS is different, some people get symptoms on DMDs others don’t. I have RRMS,I was dx 16 years ago and for the first 7 years had no relapses. Then I had a relapse and then nothing again for 2 years and this pattern has continued. I was offered DMDs after my last relapse and took ages deciding if I should go on them. I eventually decided on Rebif and started August 11. At first it was ok I used the rebi smart device, however I started getting headaches inspite of always taking paracetemol before my injection. Somedays the headaches would last all day.My legs also felt very heavy. I persevered for 10 months and then on my MS nurses advice decided to take a break from the rebif and consider a change of DMD. During my break I felt so much better no headaches and have now started on copaxone. I have been on it for 2 weeks now and touch wood no ill effects at the mo, I am not even getting any site reactions-which I also got on rebif. So hopefully this drug is suiting me more than the interferon.
Take your time making your decision as it is a big committment, when I was first dx I wasn’t given the option of any DMD and I was fine for 7 years.You will be given lots of support from your MS nurse and which ever DMD you choose the drug company will send out a nurse to train you on injecting and make follow up visits to check up on you.
I can tell you the reasons I chose Avonex, and how the side effects affect me…
I chose Avonex because the injections are once per week, this means I do it less often and thus have less to plan for and stick needles in me and all the possible effects that can cause (the other drugs are once every 2 or 3 days). I use the injection pen, which is very easy to use and conveniently delivered every 4 weeks by Bupa (via nhs).
I have been taking Avonex for about 8 months now, the side effects are described as “flu like” but what it means for me is a few hours of shivering (my body thinks I’m cold but I’m not) during the night since I take it just before bed time. It’s not fun but it’s certainly manageable with some regular pain killers such as ibuprofen. If I sleep undisturbed I sometimes even sleep through the shivering and wake up unaware if I was event affected.
The side effects of Avonex are supposed to go away after a few months but in rare cases they don’t, it appears I’m a special snowflake but as I told my ms nurse. The benefits of what the drug does, despite me seeing no visible improvement far outweigh the side effects, and since the specific drug I use is the absolute maximum period of time I can conveniently live between injections, it’s also the best one for the job.
The day after the side effects I generally feel quite weak, I assume this is because when I’m shivering my muscles are working and that obviously tires me out the following morning. All weakness is gone within 24 hours of injecting and then I forget about it for 7 more days.
Hi, I was on Copaxone for about a year but got fed up with the stinging/burning and daily pain of the injection. Although the pain didn’t last long it just wasn’t for me and I hated knowing that I had to suffer my daily ‘bee sting’.
I moved to Avonex. The injection was not pleasant I have to say. It wiped me out 2 hours after injecting… shivering, aching flu-like etc. but that was definately the worst.
As others have posted, now that my body has got used to it I take it about an hour before bed and just before I go to sleep also take some paracetamol or Ibuprofen to help and then sleep through. When I wake I feel like I’ve had flu but am well on the mend (my body aches slightly and feel a little tired)… more painkillers and a few hours later all back to normal for another week.
I am very pleased that I moved from Copaxone to Avonex despite being very nervous initially about the flu-symptoms it really wasn’t as bad as I was expecting just really the first injection that hit me hard.
Ultimately it proves that some people will do better with one drug whereas others will fare better on another. Just pick one that you think fits with you and see how you get on. If it’s not for you you can always change like I did.
Hi,just looking for some advice as not sure what to do. Have RRMS and started rebif 5 weeks ago. on full dose now, but so tired and joints ache for 24hrs post inj. Can only take paracetamol as allergic to brufen. Good thing is numbness and tingling gone but how long do you put up with these side effects.Have had to reduce hours at work as falling asleep come 2pm!!! MS nurse not too supportive and feel as though my life has come to a stop due to the side effects.
I only have experience of LDN in that it has held my wife stable for the last 9 years. However nothing works for everybody and it is worth carefully considering all the treatment options carefully.
For anybody reading this thread that doesn’t know about LDN and CCSVI:
LDN and CCSVI are not alternatives to DMDs
CCSVI has been largely discredited now and the jury is out on whether LDNhelps symptomatically, there is NO scientific evidence thatit helps with progression.
Diet may help but it is not an alternative to a DMD (Disease Modifying Drug).
Good Luck with whatever choice you make and all the best for the psychology degree.
I’ve been on Rebif for 12 years. I never had the fluey side-effects and it’s done what it was supposed to - slowed/reduced the relapse rate.
I was having relapses every 6-8 weeks before diagnosis - after I began injecting Rebif, which was pretty soon after diagnosis, it took about 3 month to work and 6 months later I was back to full health. I’d been very, very ill just after diagnosis.
Now, I have a relapse about once every 3 years (on average) and my neuro thinks I’m doing well, but after all this time, I haven’t progressed - in fact, I’m very well. Your body needs time to heal and a DMD or one of the newer treatments will help.
I have taken LDN, but have stopped now and it’s made little difference to the MS symptoms, but it did have a ‘feel good’ effect and my bladder symptoms were greatly improved.
I also use diet - but it’s a minefield. It took me 5 years to find the correct diet for me. I have to eat a very strict low carbohydrate diet on doctors’ orders. Not eating gluten, helped my nerve pain and fatigue.
CCSVI treatment is very, very expensive and I haven’t encountered one single person who has had a brilliant result. I have a good friend whose family paid 3 venoplasty operations and whilst her veins are open, she’s worse than before the procedure.
Get stable - try a DMD - you may not get the fluey side effects either. Then think about other complimentary approaches. The most important thing is to stop the relapses.
Hi,just looking for some advice as not sure what to do. Have RRMS and started rebif 5 weeks ago. on full dose now, but so tired and joints ache for 24hrs post inj. Can only take paracetamol as allergic to brufen. Good thing is numbness and tingling gone but how long do you put up with these side effects.Have had to reduce hours at work as falling asleep come 2pm!!! MS nurse not too supportive and feel as though my life has come to a stop due to the side effects.
[/quote] Not going to kid you - the early months on Rebif can be pretty tough. Like you I can’t take ibuprofen. I also can’t take codeine. I nearly gave up a couple of times, but kept going because I knew that Rebif44 was the best injectable DMD and I needed to stop the relapses. There are things you can do. First of all, use the full 8 paracetamol a day. Always take 2 with the injection - prevention is best if possible. Try injecting in the morning instead of at night if you aren’t sleeping well. Maybe try cocodamol if you can take codeine? Tell your employer that you are on new meds and have some changes made to help until the side effects wear off (eg work at home on injection days?). Hopefully the side effects will wear off soon. I can tell you that although I had a miserable time, I am very glad I persevered - not only have my relapses stopped, some of my symptoms have actually improved! Karen x
[quote=“Pat”] I don’t recommend DMD’s at all. Avonex nearly killed me, and that is not an exaggeration. My opinion is steer clear, you’ll be none the worse and won’t suffer the side effects. [/quote] That is unbelievably irresponsible advice! Someone will be ‘none the worse’ for not taking DMDs?! Well, I guess you must know better than all the thousands of people who benefit from DMDs, the medical profession, the scientific community and all the data that prove that DMDs reduce relapses, reduce disability, slow progression, delay the onset of disability and even extend life expectancy! I’m sorry that Avonex didn’t work for you, but that does NOT mean that it doesn’t work at all.
You will be worse off for not taking DMDs as you will get more frequent relapses and will probably move into the progressive stage more quickly. Pat’s experience of a severe reaction to Avonex is rare but it can happen. I also had severe allergic reactions to interferons and also to Copaxone. The odds of that are really, really small!!! But I am still a firm believer in the benefit of DMDs and went onto a new form of chemo as soon as it was (briefly) available and will now be one of the first people to be on BG12 when it becomes available.
Also do be aware that some people prefer to use LDN and swear by it although it has never been proven to work and is NOT a DMD. At best it can be listed as a medicines for relief of symptoms but as only anecdotal evidence is available to date it is hard to know for sure how effective it is. BUT it does not stop relapses or slow down progression so it is NOT a substitute for a licenced DMD.
Likewise CCSVI is a theory that gained rapid popularity via the web but has not been proven to work and as more clinical trials and studies are done it is looking less and less as if it is a viable treatment for MS.
Also diet has been touted as a potential cure or treatment for MS and again although eating healthily can only be of benefit to all of us it is neither a cure nor an effective treatment for MS.
Best of luck with your choice of DMD and do remember that which ever one you choose, you aren’t locked into a lifelong contract If it really doesn’t suit you for whatever reason, you are quite within your rights to ask to change to another treatment.
thanks karen, just needed someone too off load with as bit fed up. spoke to ms nurse today and she did say the first few weeks of rebif you could encounter symptoms of a relaspe. patience is not my best vice.!!! Anne x
Karen x