Hello everyone :) This comes from reading an update on DJ from Lulu.
DJ is very allergic to Baclofen and someone else on the thread said they were allergic and Lulu said that she just started on Baclofen. I am on Baclofen and they keep increasing the dose. So for anyone on Baclofen I/we would benefit from you sharing your allergies or side effects from Baclofen with us.
this is a great question Erin - I've been reading a lot about baclofen and have talked to my doctor's MS nurse about it in depth. This drug actually works in our central nervous system and is much more than taking an aspirin or slapping a band-aid on a wound.
I do know that every patient who takes baclofen should know about the dangers of stopping this drug without tapering down. It can cause seizures, hallucinations and other serious problems.
I seem to be having no problem with Baclofen but want to know other's experiences.
PS Sarahsmom (Julie) and T-Lynn have both had very bad experiences on baclofen too.
I have been taking Baclophen for over a year now. Yes wobbly, it is for muscle spasms, at least it is in my case. I have had no problems with it. Lulu, good to know about tapering off. I didn't know that. I quit Ambien cold turkey last summer, NOT a good idea! Amazing the side effects affect each of us differently.
I think I might have made a mention on the Lu's thread about DJ that I had a question about her reactions.
DJ sent me a PM and told me about her reactions. My understanding is that it consstricts her GI tract and other organs in a very painful way. I hope she will see your post and respond with better detail.
As for me, I had a reaction to it when it was administered to me in the hospital. My reaction was farily immediate, like within several hours not days or weeks. My reaction was a severe rash over my face, chest and back - the typical hive reaction. I tried it again a few months ago not believing the hospital reaction and it happened again. So, if you haven't gotten that type of hive reaction by now, then your body must tolerated it pretty well.
I was disappointed that this reaction happened because I've heard how much people benefit from it. Hope that helps.
Thanks. I feel better because I thought about what you said and I haven't had hives etc. and have been on it for a while now so I must be ok. It has helped big time with the muscle spasms and even helped my chronic headaches so I would hate to lose it from my arsonal of weapons against the pain of this disease.
I would like to hear other experiences so that myself and others can be watchful. I have heard stories of people taking the same meds for years and then all of a sudden, poof, they start having problems.
Sorry this med can't help you. I hope that your doctors find other choices to help with your pain.
I've been on Baclofen now for well over a yr and have myself tapered down to 10mgs a day. So far, so good.
This is an important topic to discuss since many of us are on more than one med. Which greatly muddies the waters when/if it happens. An allergic reaction can happen at any time, no matter how long you have been on it, or how well you tolerated it in the past.
I learned so much from my allergic reaction (was on generic for Restirol, which is temazepam in addition to DMD), the different phases, immune processes and lots of help from our Dear Doc Q.
My doctors steered me away from the true culprit folks - stating "Since you've been on it for awhile..." it's probably something else.
Best thing to take out of this are the warning signs, which can be many, but mine included a garden variety of hives, severe itching, swelling (to the extent I couldn't even eat a sandwich as everything swelled and turned into a hive and grew), petechia, bruising, rapid pulse - you name it. You could watch my shirt move up and down it was so bad.
It continued to evolve and get worse, until I stopped the med on my own.
Would just hate for anyone to let a reaction get to that extent like me. And, surely sweet DJ was unknowingly given what she knew sghe was allergic to. Thank God she's here with us to tell the tale.
Think T's had to do with one of the additional additives.
We can't walk around afraid to try something when you really need relief, but please know it can and does happen. Like Erin says "poof" out of nowhere probs.
I just had an allergic reaction last night. Itching, hives... then the worst. I collapsed and started having jerking mvts of my arms and legs. I was awake during the whole thing and don't think it was a seizure. Lasted about 15 seconds (and happened twice). I took a Benadryl and the hives and symptoms went away within the hour.
i think drugs effect everyone differently on the whole.
i have been taking baclofen for about six months now and it has not caused me to much problem other than a little drowsy on first few doses,
and it does what its supposed to for me .
hope this helps
Itching and hives are symptoms of an allergic reaction, but the jerking movements of the arms and legs are something different. It's possible to have a partial seizure, where you remain aware, but your movements are uncontrolled. It's also possible to have myoclonus without seizure activity - that's my problem.
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