Methotrexate Ivig "combo"

[trueblue06]

Hi family out there in MS land...
How is everyone out there?
No doubt there are plenty of members still stuck in limboland, so frustrating and don't I know it after being there since 2006 until April 2009. Seems like only yesterday that I was in that town, boy how time has slipped away from me.

Long time since I have been in to check on everyone. I have been flat out with treatment non stop since April with my Ivig infusions. Most times I get a headache which lasts a few days. I must admit that I have been very drained by the treatment and my lack of energy seems much worse than before. I can hardly get out of bed some days.

I went back to check in with my very wonderful Neuro and I am sad to report that so far the Ivig hasn't worked and I have not noticed any real improvement unfortunately.

Now, that could very well have something to do with being stuffed around for nearly 3 years by the idiot that calls himself a Professor of Neurology.

As my wonderful Neuro checked me out again and noted no actual physical improvement of my condition he now wants me to start on "Methotrexate" as well as continue with Ivig for the time being. He said that he is treating another patient with this drug and he has made quite a remarkable recovery. Fingers crossed everyone!

I know it is used in arthritis and is also a chemo drug used for cancer and the like. I will be on a fairly small dose of 7.5mg once per week with folic acid the other 6 days. The list of side affects is longer than my list of symptoms and drugs I already take combined...man, this is one scary scary drug.

Being the true professional that he is he told me all about it, gave me specific instructions and ordered blood tests to check my "everything" in case the drug starts to stuff up my liver, kidneys, blood, bone marrow etc.

I have read and am told that nausea, vomiting and diarrhea are common to start with and then they settle down. I have anti-nausea medication anyway so am not too concerned about that just yet. Probably won't say that in a few days time if I start to vomit! I don't start until Monday and I need to get a blood test first before I begin.

I would be grateful for any personal stories be they horror or otherwise.

Thanks anyone who can throw some personal experience my way.

TB

[Lulu54]

Hi TB,
I have no experience at all with methotrexate but have read some about the treatment. From my perspective, you are very fortunate to have found a doctor willing to work with you this way. I think most neuros would have made you try your current therapy a while longer before wanting to switch.  

Good for you for being brave to try this scary drug .....  I hope you will stay in touch and let us know how the treatment goes.

be well,
Lulu

[sllowe]

Hi Trueblue,

Nice to see you pop in!
I've no experience with the Methotrex nor am I read up on it either, sorry :(

I'm wish the Ivig provided positive improvement, and thay didn't have to move on to something else, but like Lu says very proud of your bravery to do so.

Will you be able to take a break inbetween? Regain some strength before starting?

-shell

[Sarahsmom46]

You have a very positive approach to this treatment regime you are about to embark on.

I know people who have been on methotrexate and others who have been on IVIG, but you are the first person I'm met who will be on both at the same time.  There is probably more we will learn from you than what you can learn from us unfortunately.  

The only thing I know about the methotrexate besides the challenging side effects is that it does work.  You know how people say steroids are a miracle drug when you are in a bad situation with inflammation and how well and quickly it gets the inflammation into check?  Well, methotrexated is something like that.  

I'll add another ,plese, in letting us know how the treatments are going.  Definitely you should try to keep a journal, even a daily accounting, of how you feel and how the treatment is going.  It will be good for your historical records to go back and look at the progression.

I wish you success with this treatment combination.  Again, please stay in touch as we've missed hearing from you.  

Julie

[trueblue06]

Thanks all for your replies it is good to hear from everyone.

As my condition is so darn rare it is hard to find anyone who has been on this particular type of therapy or has had experience with it in the long term. Quite a few on the GBS / CIDP forum have experience with Ivig of course but I can't find anyone with info or questions on Methotrexate.
Thanks for thinking I am brave, sometimes I don't feel that way, more of a whimp than brave! I am a bit scared of this drug but I know that my Neuro will be on the lookout for any changes in my blood work. I just hope I don't have a serious reaction.
I am a long way from a hospital and the ambulance service is not local here and they have to come a long way. I shouldn't panic so I must stay positive and believe that I won't get any symptoms!
He did mention that if this doesn't work there are lots of other treatments we can try....how good is this guy?
I know he will do everything he can to get me better. He did say that he really believed that when I go to see him in around 6 weeks I will be feeling much better. He is just a wizard! Isn't it a shame that I can't share him with everyone who is stuck in limboland? You can just tell that he is so sincere in trying to make a difference in your life and get you better. That is a sign of a dedicated man in my eyes.
I bet if a few of you could go to him you would get some long waited answers. When he first sat me down and BEFORE I told him anything or showed him my Mri scan he said " I don't want you to worry, I will get to the bottom of your problem and work out what it is and I'll sort you out." The answer came within 1 hour of being with him. That is a real WIZARD of Neurology, and he is just so nice to go with it!

We had a little chat about the dill I was seeing and once again he let me know in a round about way that he doesn't think he is worth 10 cents. He has an agenda and because I didn't fit in with that he didn't want to know me and frankly didn't care what I had. Stupid isn't it?
That neuro is so darn dangerous. He always has this really stupid smile on his face, sort of smug really, so I have now labeled him "the smiling assassin." ( this was a nickname that they gave to one of the Bali bombers named Amrosi, he always had this really smug smile on his face).
The old neuro's disinterest in me and his dismissal of my symptoms could have killed me in the long term. I could have deteriorated and may have even become a quadriplegic, that is how serious this condition can be if not treated. I had no treatment for the 3 years that I was his patient. It's not hard to do the sums and work out that a very long time has elapsed since my first symptoms appeared. In CIDP early treatment is critical in regaining lost peripheral nerve function.

When I said his nickname to my "now neuro", he couldn't stop laughing and just patted me on the shoulder. He would never say anything bad about him but I can read between the lines and I am sure he has his doubts about his sincerity.

I'll let you know how the treatment is going. This could be valuable to some members who may end up with this condition at some stage or know someone who has it. Thanks all for caring about me, it means so much!

TB

[Want to feel well!!!]

Hi TB,

Hope the new treatment does you some good!

I have been on Methotrexate since March and it has been a big help for me, although our health issues are quite different.  

I will say that when I took the first dose (which is higher than yours) I was pretty sick that day and had the vomiting and diarrhea.  So the following week I spread the dose out evenly throughout the day, took the pills with food, and it seemed to help...the entire dose needs to be taken with in 24 hours.  After the first month or two most of the side effects were gone.

A friend of mine has been on it for 8 years and she has had no long term adverse side effects yet, and it has been a great held for her.

I also am taking other immunosuppressants but I can tell Methotrexate has helped with my muscle issues.

If you read about Methotrexate on the Internet, it does sound scary, and my rheumy warned me NOT to put too much weight on what I read.  He gave me his own credible information.  In smaller doses it is not as awful as you might read.

Good luck to you and hope the Methotrexate is helpful fo ryou.

Wanna :o)
  

[trueblue06]

Thanks very much for your info on Methotrexate.

I am on a very low dose of this drug 7.5mgs once a week.
I have postponed starting it due to the vomiting issue. I am due to travel up to the hospital on Thursday for my Ivig treatment and I don't want to feel sick or have diarrhea as it takes me up to 3 hours to get to the hospital on public transport, then the same amount of time to travel back again. I don't have any family or anyone who can take me so I need to be a bit careful about any reactions I may have and how they will affect my travel. I have decided to start Methotrexate next week which is my off week from the hospital. That will give my body some extra time to adjust and if I do get nausea or vomiting I don't have to go anywhere.
It is good to hear that these problems go away with time which is what my neuro told me. I am glad your friend has had no long term problems taking this drug. 8 years is a long time so that is good to hear.

All the best with your condition by the way and thanks once again for your valuable info.

TB

[Want to feel well!!!]

Your plan to wait until next week sounds very wise.  Hopefully the side effects will not be too bad for you.  Good luck to you and I hope it works well for you.  

Keep us posted!

Wishing you wellness...
Wanna :o)