This is my second going on third year on Remicade 600mg q month. Several months I have had off and on a warm feeling in my leg. This month I have the entire left side of my body feels hot like a sunburn and it my skin hurts if anything touches it. Clothes or anything. It started as a warm burning (like a sunburn) and has progressed until it hurts enough that I cry out if something brushes against me.
What the heck is this??? My family Dr thinks it may be the Remicade, my Rheumatologist only comes up 4 times a year. I will try to contact him tomorrow.
This is enough! Really do not need any other weird and wonderful systems/issues.
It was ok when it was just warm as it is cold here, felt like I was sitting on a heating pad. The pain is another thing.
Any one have any experiences like this or suggestions?
There some very significant side effects to the drugs used in Arthritis.I have no problem calling the manufacturer of a medication about how they test the drug, in the case of MS medication, they extrapolated. Which really means they lied. So, this will make you cry and or laugh. They asked patients have you had fewer relapses? Then they did some kind of new math and came up with number or percent of relapses.Being that I have PsA and MS, I jumped on that like mongoose to a snake. I mean come on, I want to meet these patient or Neurologist that can predict a relapse of my MS. As the ladies in Vietnam would say, never happen GI.In the case of my PsA I called and once again asked the query, how did they come up with their number etc. Once again I got a supercilious answer. The only true real data is the side effects. They could not even back up their claim they use on TV. You take back your life bla bla bla. My MS medication cost 3,000 a month. They hold the patent for life. I'll have check fact. So, multiply say 9 million people you certainly see the incentive for them. Just ask your Rheumy Dr. one simple question. Will this drug prevent progression of my PsA. You'll get a pretty cool skirt around, lots of words. Tell the Dr. I only want a yes or no. My rheumy said if I won't take this and that, you can not be my patient, don't let them bully. Good luck
Its roughly 10,000 times more likley that if what you have is parathesia that its caused by PsA than by the Remicade. Parathesia rarely effects an entire side of the body. In any event parathesia is a common symptom with PsA. The fact that its been reported as occuring with Remicade, does not make it a side effect of the medication.
Thanks for that info. I find that I do not know the difference between my PsA symptoms and my Fibro symptoms due mostly to ignorance. The symptoms described happen to me quite often to I guess I need to mention them to the doctor. Currently I am on cimzia and MTX after trying everything else but remicade. Today I got my blood work. My white blood cells are high, red bloods cells low, c-react high, sed rate high (twice what it has been) TSH low. No idea what's going on anymore and about to say the heck with it. I feel like poop. Frankly starting to doubt I have fibro except for the mental fogginess. Sorry not trying to hijack the thread.
Albeit paresthesia rarely affects an entire side of my body. Something has since Sunday effected my entire left side causing it to feel toasty warm at all times (as if I have been sun tanning in very direct sun on a dark coloured deck) and when area’s are touched or brushed by anything it hurts like touching a bad sun burn. I can identify a line directly down the centre of my body from my neck to my feet with distinct differences from left and right. This is why I was posting for help. Now on top of it any sensations of from sitting for example; the left buttock feels duller than the right. Washing my hands the water feels different hitting my left palm from my right.
This is a change and I am scared. Every time I have been told do not worry it has been something: PsA, trigeminal neuralgia, large tumour, encapsulated CA (lucky it had not spread out of its capsule), fractured arm etc… This is different and weird and I do not have a lot of options where I live.
I just was looking for some help to figure it out as I try to connect with a doc. The earliest I can get in to see someone is two weeks unless I go to ER. I would not triage this yet as anything higher than a CTAS level 4 so will not go in unless something more diffenitive changes.
I am aware that paresthesia is a side effect of tons of meds much like nausea and vomiting is. My concern is is it related to the med? The PsA? Or the lesions they found in my brain on MRI ( been waiting to see neurologist since May).
Kirsten- You said, "I am aware that paresthesia is a side effect of tons of meds much like nausea and vomiting is. My concern is is it related to the med? The PsA? Or the lesions they found in my brain on MRI ( been waiting to see neurologist since May)."
It seems much more likely that this is related to something going on in your body, not meds. It sounds like you already have some known factors, such as lesions. Doesn't this seem more likely?
That is what I am concerned about. A) what is causing the lesions and this stuff ( which is changing as of today) B). I do not want to stop the Remicade unless there is no other choice.
Today I can add in that my sensation is dulled to anything touching my left side; as in I did not really feel something poking at me on my left arm and I sat on a toy and only felt it on my right side. I feel less stable on my left leg and I also have an almost electric?(kind of like when you lean on your elbow- you lose feeling and then you get that sparky odd feeling before it returns to normal) Feel to certain parts on the left while others are dull. Whole left side still feels hot. Right foot now also feels electric like.
I can not call anywhere only option is ER and I do not think that May work. Who knows. I have an NP friend and I will be calling her tomorrow. I am scared.