drove to Pittsburgh yesterday,, and got my IVIG treatment,, took a little over 4 hours,, on the way home I was trying to pull out from a stop sign,, pushing teh gas pedal and car would not move,, took me a minute to realize that my foot wasent pushing on teh gas pedal at all,, it just felt like it was,, as teh evening went no,, I jsut felt sicker and sicker,, never had this reaction before andhad to cancel todays infusion,, it was to far to drive and stikll feeling sick,, I also had to go to the hospital this moring for bloodwork and xarays of my abdomen,,, from this stool thing,, I dontknow whats goingon,, my head hurts constantly,, and i am so tired of this numbnes and lip burning,, I knowits a neuropahty,, but I;m tired of it,, bowel movements have really slowed down,, and I guess I just have to wait for the gastro to see the labs and xrays,,
Is there any way to get the IVIG closer to home? That is way too far to drive yourself in your condition. I go just 1 1/2 hrs to see my neuro ( and always have someone drive me) but I get my treatments locally. Do you live in PA and if so where? I have a wonderful neuro in Hershey.
I go an hour each way and I have some one drive me. I agree with you. Your reaction to IVIG can differ with each infusion and you should have some one take you.
Hi Navy Dad, It worries me that you drive yourself to these hospital visits!
In your condition, I think someone should take you.
Im sorry you diden't make it today for Infusion, maybe you are giving your body too much to cope with at a time.
Don't you have Ambulance to take people to these hospital appointments .
If we in the UK are too ill to travel or drive, then we can book an Ambulance there and back.
It seems you lot travel miles and hours to see your Docs..
I'll never complain about our National Health Service here..
I hope you get all your results soon, and that at last they can get you seen to.
Take care Dolly.
You might want to inquire with your insurance company about home infusions. I received IVIG for 11 years and the insurance companies used during that time (both Aetna and BC/BS) actually preferred infusions be done at home since the cost was less (considerably). I'm serious. I actually had to get additional approval every 3 months to have the infusion in the doctors office (so doctor could observe, adjust dose, etc) because it was over $2000/dose more than the same infusion at home with a qualified home IV therapy nurse. My infusion would take 6-8 hours because my body could not tolerate more than a rate of 60ml per hour. At home, I could rest or sleep during the infusion and only had to worry about getting a ride every 3 three months. It can't hurt to ask. You can also ask your doctor's office for assistance with this...they know all the ins/outs of getting authorization with insurance. If the insurance co. says no, then by all means get someone to take you...not only for your sake but also others on the road.
Good luck. Hope it works out for you.
Anita
navydad, Did they teach you about the side effects of the IVIG??? I would hope that they had told you to tell them when you get a headache in the back of your head during or after the IVIG. I am assuming that you are getting premedicated with benedryl, cortisone--both IV plus many palces will have you take tylenol also.
The main thing that helps with these IVIG headaches is to make sure you are hydrated and to drink plenty of water during the infusion. When a person doesn't drink enough the side effects seem to show up.
Also, are you getting anywhere with the stomach issues. Has anyone done a flat plate of your abdomen just for the heck of it? This is a plain old x-ray of the abdomen so they can see if your stool is blocked up or if you are full of gas or if there is a slight leakage of the colon that can cause air in the abdomen. People with diverticulum can have them leak and have issues.
Also, I don't know how much flax seed you ate but I would think that if one has a slow moving colon and isn't drinking enough there could be a constipating effect from the flax. Say, are you taking any pain medications that could be slowing your colon down? Also, the antidepressant drugs are notorious for causing constipation. Helps to take stool softeners and milk of magnesia I think. Plus stay close to the bathroom til you get cleaned out. Has anyone ever tried doing things that would empty your colon? Sometimes after this is done things start to work better. Maybe you need to talk to your GI doctor about enemas? Just a thought. Irish ;D
they give me nothing before starting, just stuff it in me and crank it up,, and yes I had a flat panel xray done yesterday,,
Navydad,
Irish made some good points. I cant believe you're not pre-medicating with solu-medrol, benydril, etc. This is not a medicine to mess around with. The way you describe the level of care you get (from all your doctors), I don't know if I would partake in a treatment of this magnitude. Changing brands, rate, etc can all have serious side-effects. Reactions can happen at any time regards of how long you've been getting infusions. Heck, I got a very severe case of aseptic meningitis from IVIG after 11 years of use and can never have it again now. Do not underestimate this drug and it's potential side effects. Sounds like you will have to be proactive (an understatement) in regards to your care, doctors, and getting to/from your appointments. Doesn't sound like you've ever been pleased with your local doctors. Maybe it's time you head to a bigger facility with more expertise. Hopkins is within a few hours of you, isn't it? You've mentioned your family's support, so I'm sure they would help you get to better care.
Let's hope they get back to you quickly with the results of the GI xrays/scans and blood work...and some answers.
Anita
We had hoped that the Doctors in Pittsburgh would have provided some answers,, but they havent,, sems like every dayt I just fall al ittle farther,, my stomach is a mess,, the neuropathy just seems to get worse,, last night it felt like a gun shot went off in my left ear,, woke me up,, I have been having problems with my sinuses for so long and it just feels like the left side of my mouth and face is rotting out,, there always numb,, and taste rotten,,
Navydad,
Think I warned you about this...I had the SAME reaction to the IVIG..though, 4 hours is quite fast and they didnt pre-med you? we have to be our own advocates and be prepared
before you have this stuff done? They dont care...seriously....? I ended up bedridden for 2 months after mine ,and a few hosptial visits including spinal tap to rule out meningitis...NIGHTMARE..I was even prepared..very low dose, ran slow, medrol infusion, tylenol and 3 hour saline run afterwards. Seems our bodies are the same..including the stomach issues..but, Im guessing the stomach issues are stemming from your neuro issues. I have the same thing. I have to use a colema enema board to go to the bathroom, or i wouldnt be able to go at all. I cant take laxatives, they make me sicker.
I would have course have a colonoscopy, upper GI and other tests to rule out any blockages, but Im still guessing its the gastroparesis stemming from the neuro issues
your having. Make sure your not taking loads of extra fiber either, will make it worse..its not constipation...gastroparesis is another ballgame! Ask the doc if you
can try some reglan or something? I had bad side effects from the reglan, so I cant use it. Feel so bad for you!! hope your feeling better
I;m not sure what in the world goes on in hte infusion centers I have had to go to,, oh there ready for a adverse effect,, but all they seem to do is monitor your temp and blood pressure during the whole infusion,, I had one bad reaction at another place and they were quick to stop teh infusion,, and med me,,
Last year in a attempt to slow the neuropathy,, they had me do 3000mg of steroids over the course of three days,, I drove myself to all three infusions,, by the third day Ihad no clue who I was,, where I was and how to get home,,, and they knew I had drove myself,, I had this happen after a spinal tap,, they knew I was alone and they let me go after laying on my back for two hours,, I just dont know about the way medicine is practiced here in western Pa,, its surreal
I think this happens everywhere....I had reactions at two different hospitals. I just know, the slower the infusion the better, almost double the time as a standard patient.
Saline is a must for us sjogrens people. I know Rituxan, they can run it with the drug, where as IVIG, they had to wait until it was over to run the saline.
I still felt ill on both around 1 hour into them...my neuropathy actually felt worse..then, a few days later when the medrol wore off, I was very ill. I had to stay
on some Medrol tabs, and havent been able to get off of it still. Prob is our bodies just cant handle all this stuff it seems. I just know to read the doctors orders first and
make sure they have/do everything. The pre-meds especially. Wish you had some more support from home. Everyone treats this like its nothing because we dont
have Cancer or something. Really bothers me too. My mom has friends going through chemo right now that feel better ,and has more of a life than I do? go figure?
This disease is horrible!!!!
Navydad,
Since you have doctors that are willing to order these very expensive and powerful meds (IVIG, Rituxin, and IV solu-medrol over 3 days), then ask them to state you are homebound. If your insurance pays for these meds, then they would have no problem paying for home health (because it's cheaper). Not only will this solve your driving problem to these treatments, but you will also receive one on one care from a nurse in your home. With the severity of your reactions, you would benefit from in home care. Sounds like you could use a break and this is one way to get it.
Do you folks that have IVIG therapy feel that this treatment works well enough for all the trouble and expense.
Hi Navy Dad
I am so sorry that you are having all these problems. I wish I had a suggestion to help you but I don't. Just know that you are in my thoughts and I hope things take a turn for the better soon. You have had enough for a lifetime.
Warm and healing thoughts are being sent your way.
Joyce
I have been ON and OFF IVIG for over 6 years. If I am off of it, I deteriorate. I do not take any other powerful narcotics or other meds to confuse matters. I am very grateful to have the option of IVIG. I don't have a lot of other stuff like past surgeries or chemo or anything that complicates the results from the IVIG. If I didn't get it, I don't think I would be walking. That said, I am still sick and don't feel that anything will go into remission or anything like that. What function is lost, is likely lost, altho the docs say that neuro issues are slow to resolve. IVIG is not magic. When one is sick one must endure some illness. Medical science does not have all the answers. People have all kinds of disease with no cure, ALS for one. In my opinion, one must be very careful with medications when one has neuropathy. One already has a neurological system that is not working....adding meds that affect the neuro system (which is many meds), can complicate things and make one even sicker.
Narcotics will stop the GI system dead. Benzo's will cause horrible rebound that is the most awful feeling on earth...xanax is the worst, because it lasts only 4 hours. Klonopin (clonazepam) is a long acting xanax. Xanax is banned in the UK. Interdose withdrawal is a physical sensation that no doubt leaves one thinking they are dying...horrible, horrible sensations and victims have NO idea what is going on...most never, ever suspect it is benzos. If any one takes this xanax and feels bad 3 to 6 hours after their last dose, they have interdose withdrawal....and need to talk to their doc. Some drugs such as Klonopin have longer half lives, 18-90 hours and people do not associate why they feel so bad, with the fact they had their last drug dose that long ago.
Tricyclic antidpressants like Elavil (amitriptyline) and drugs like Flexeril (cyclobenzaprine) cause constipation, low BP, urinary retention and most of all dryness. Opiates, all of them, cause dryness. Fentanyl patches will shut things down as well. Ambien and other Z drugs cause a withdrawal syndrome that is not totally unlike some of the benzos. Benzos cause this at extremely low dosage, if taken several times per week over two weeks. Even Neurontin (gabpentin) causes a withdrawal syndrome.
I am not saying that one can not use these things, because there are few options for pain management. I know, I am in pain too. This is not a judgment thing....these drugs do have side effects that resemble disease and exacerbate disease. Several added together are even more potent.
One can not judge how well treatments work when they are complicated by usage of drugs which can cause hideous problems. Many problems attributed to disease are drug side effects.
A lot of illness is iatrogenic. The more stuff you get done to you the more chances are that things get messed up. Every needle to the spine, every cut in surgery...it all adds up.
Many people get IVIG and do well, but they usually reserve it for cases where risk is outweighed by benefit, and where they feel there is inflammatory process, or neurological disease due to inflammatory issues. I get Tylenol for premed, and have only been really sick once, knock on wood. If I do get sick, it isn't much different than those that get chemo. I had the misfortune of getting this disease, and this is what I am stuck with. I am glad for me, that there is an option of getting IVIG....because there is nothing else for me. It is the best they can do for me right now.
Inga, I like the way you think,, unfortunately i cant reverse the surgerys Ihave had,, but I can do some other things, I can get off these meds that are doingnothing for me, I just had to get soemthing out of the freezer andmy arms feltlike it was being burnt,, almost makes one want to cry,, my guts are a mess from this,, wether its from meds or not,, Ihave no idea,, i suspect neuropathy,, I am still weighing the rituxin,,, I catch everything that comes down hte pike,, andmaybe itsjust time I have some serious nervous systeminvolvement,, and get on with whatever life Ihave left, you just want to grab at anything that might get you back to what you were,, but I realize thats not going to happen,,, and thats the sad part,, I grieve for what I was,, and have a real dislike for people who think theres nothing worng with me that alittle good brisk walk wont cure
There are several procedures that if I had to do over, I would not do. I am sure they damaged my spine. My current neuro advises against any procedures that traumatize the spine or nerves in any way....'no spinal picks'...he says. Anyway, what happened, happened. I have an orthopedist advising me to have a surgery at this time, and my neuro and rheum are totally against it....and I agree. Some docs think they can solve problems for people and they advise all kinds of procedures, sometimes without doing other tests, or considering OTHER diaganoses...after the procedure fails....they drop you like a hot potato.
I believe that our bodies can recover to' some extent' if we leave them alone....to a degree. I don't advise any one quit treatment, but, I think that maybe, if we ingested a few less meds, ones not essential to keeping us well, we may do better. This from a 10 year long user of ambien, who now sleeps normally....(most nites). One likely won't be totally well, but one can achieve some extent of equilibrium, but it takes a while. We didn't get messed up overnight.
I don't think people understand the mechanism of some drugs....such as the benzodiazepines (valium which is diazepam, klonopin which is clonazepam, ativan which is lorazepam, xanax which is alprazolam, etc). They cause a change in genetic transcription. They cause a genetic change in the shape of the GABA receptor. When you go off the drug, you have to basically reprogram your body to grow the GABA receptors you were born with. This can take up to two years and you don't feel real good while that is happening. It is even worse when you have a disease, since you do have pain and other issues to boot.
Any poor soul who is experiencing either tolerance withdrawal or interdose withdrawal of these compounds truly and justifiably feels they have a serious disease which will kill them since every body system is affected by these drugs. Any one who has used them daily, even once per day, must go thru a physical withdrawal and must talk to their doctor about it.
Anyway, I hope you feel better soon. Take time to think thru all decisions. Interventions do not neccessarily make us better all the time. Weigh risk versus benefit.
I have all the same symptoms basically as navydad ,and Im not taking any pain meds, anxiety, anti-depressants or anything else that would cause the CNS issues, especially
the stomach.
Doc seem to think its the sjogrens/autoimmune causing all the neuro issues. Which I have to agree. Just not sure why nothing is helping.
Everything is a risk, as we know, and when your very ill, you will try anything.
Navydad, if you do decide on the rituxan, Please, please make sure you have someone with you, and that you tell the doc to "Double" your infusion time, and the
pre-meds or course, (sol-medrol, Benedryl, tylenol, saline throughout the entire drip)It makes all the difference in the world.
I have a lot of the same symptoms too, and am only on IVIG and one other medication, mirapex, for severe restless leg (arm and back). I have had the experience of both being on and off many of the frequently prescribed meds, and most of them made me worse. Narcotic are notorious for plugging up the GI system...so bad that nothing works. Reglan can cause permanent movement disorders.....so it pays to be careful with that drug, (also known as metoclopromide).
I HAD to go off opiates and other drugs that suppress the nervous system. There was no choice, I was totally stopped up. And I wasn't on much comparatively. With AN one is exquisitely sensitive to drugs. My doc only uses baby doses of anything, including contrast dyes.
IVIG and Rituxan are not the same, however, one can get reactions to both. IVIG is immunomodulating and Rituxan is immunosuppressive.
Navydad, you should NOT be driving yourself...or at least take some one with you if you can. They took away my home infusion, so I have to drive, but you seem to me to qualify to be homebound. I don't think tho, that they give Rituxan at home, only IVIG, but I am not sure.
Autonomic Neuropathy is a type of PN, and it is what affects the vagus nerve and ALL other body functions including tears and saliva production. Small fibers are ubitquitous. If you have PN and have sensory neuropathy, you can also have autonomic neuropathy. If you already have AN, (and I do) drugs really need to be balanced very carefully.
Good luck to you for the infusion. Do ask for premeds.
either through ignorance or just from being stupid,,, I jumped at anything to try and make my body somewhat whole again,, and that included operations and meds that I felt where being prescribed with my best intentions at heart,, Now I have been reduced to nothing like what I used to be,, I took the drugs,, had teh surgerys, did what I was told and put my blind trust in People without even considering that they had no clue what they were doing,,
I am sick of my guts not working,, I cant eat without my mouth burning all teh time,, I am jsut fed up with life, so many times I complained to my GP and the ( specilist) that some things were worse then others,, but got the deaf ear, I have no quality of life what so ever,, my fingers dont work,, I eat with some kind of slime in my mouth constantly,, I am tired of calling or begging for help,, I cant enjoy life when I am in pain constantly,, arms that jsut burn,, or feel cold,, now that my guts are screwed up,, now what,, I have to eat, but nothing goes through,, look back over my post from over a year ago,, I screamed to high heaven about my guts,, but no one cared to listen,, so what happens now,, do I just stop eating,, or eat and pray that things move, I have gradually given up more andmore of the drugs they have prescribed,, my family just sits there,, of course they have no idea what I am going through,, I wonder at what point I just endup in a wheelchair or have a tube down my throat to feed me,, I;lm scared,, and have no where to turn,, and no one to talk to,, I dont understand why I have to go through this,, I dont understand why my hands are the way they are,, yes I;m complaining,, I can scream to high heaven but whats that going to do except land me in a nut house, its a miserable life,, it truely is,,
Quote from: gurs on February 27, 2010, 04:25:50 AM
I have all the same symptoms basically as navydad ,and Im not taking any pain meds, anxiety, anti-depressants or anything else that would cause the CNS issues, especially
the stomach.
Doc seem to think its the sjogrens/autoimmune causing all the neuro issues. Which I have to agree. Just not sure why nothing is helping.
Everything is a risk, as we know, and when your very ill, you will try anything.
Navydad, if you do decide on the rituxan, Please, please make sure you have someone with you, and that you tell the doc to "Double" your infusion time, and the
pre-meds or course, (sol-medrol, Benedryl, tylenol, saline throughout the entire drip)It makes all the difference in the world.
Thats the bottom line,, when they dont kow why they are quick to blame everything on SS,, if i stubbed my toe and a week later developed a migrane, would they say if was from the stubbed toe,, what i;m saying is,, when they dontknow,, I wish they woujld just say,, I DONT KNOW instead of blaming everything on SS,, if it is SS causing the neuro problems which I have many of,, dont just tell me its prob from the Sjogrens,, get me some answers. get me someine that knows what there talking about,, sorry,,,, I;m just fed up with the blame game that Doctors use when they have no clue what there talking about,,
Navydad
Did you try Miralax? I was having the same trouble and the GI doc put me on Miralax and I am fine now.
Give it a try. Keeps things moving
Hugs harlin
Navydad,
I read an article the other day by a doctor that said IBS is a label that doctors use when they don't know what's wrong with you, they have shoved a tube down both ends and can't bill the insurance company for any more tests. Rather then figure out what's wrong with you and spend valuable office time to try to figure out what's wrong, just slap a label on someone a get to the next patient that you can run tests on. I think it's the same way with Sjogren's.
The problem is that you KNOW somethng is worng and cat get them to understand,, other thrn start throwing up bile,, which a friend of mine did last year and was dead in 12 hours,, I dont know what else to do,,, my friend had gone in for colon surgery, for Chrohns,, after discharge, he was back in the ER twice in two days,, of course nothing was found worng,, sent him home,, then the throwing up started and a mssive infection killed him,, So I put no faith in many of teh so called doctors,,,,, I;m just tired of things that dont work,, stomach,, hands fingers,, arms,,a gut that seems to squeeze food more tehn just work right,, cold all the time,, and a family that thnks i;m nuts and only says we dontknow what to do for you,,
Navydad,
If you have had all the other tests done to rule out something else, (Lymes, B12 def, porphyria, lead-mercury toxicity, hormones, MS, diabetes) then not
sure what else it could be, other then the Sjogrens. My doc said it can GET that severe..what was your last ANA titer and SSA-SSB antibodies? just curious?
To me, even if these issues(esp the neuro) are caused from the SS then what? they will prob recommend Rituxan, IVIG, DMARDS, etc..not alot of options for us, esp
when our bodies cant tolerate them so much.
That is why they need to do more research etc.
Hope your doing ok after the IVIG. I asked my doc to put me on some medrol tabs (4mg) and that seems to help a bit..prob is now
I cant stop taking them...they make me feel 1% better...
Gursie
Ihave NEVER showed the antibodies,, and my ANA has always been less then 1:80,, so I have no idea whats going on,, no MS,,, been tested for Lymes many times,, but not sure if its been ever done right,, had Low B 12,, still do,, Vitamin D,, prob still do,, take supplement,, its just the gut issues which have developed to a more severe degree over the past couple of weeks,, Like I have said so many times, it felt like food was being squeezed through,, went to ER this month and they said Pancreatitis,, althugh CT showed it to be normal,, only lipase was raised slightly,, the pain is the whole stomach with spasms,, spreading around the bottom area and radiating down the legs,,, dont know where the neuropathy starts and this pain begons,,
With your low B12, you prob need injections..pills wont work, especially if your stomach is not functioning- your not absorbing anything. Your neuro should also do a 24 urine test
to see how much lead/mercury is in your body..The lymes is tricky. I tested positive with a top lyme lab, but I saw 5 other doctors after who told me that people
with autoimmune can generate a false-positive in that test so I gave up on that. Porphyria is the only other thing that most people seem to miss. Look that up on-line and see
if you have any of those symptoms. Wish I had a miracle drug for the stomach. I seriously cant even digest water. I tried that reglan and it literally made me shake..
no thank you!!! worried about having a feeding tube if this doesnt get any better.
take care sweetie...hang in there..has to be some answers.
Gursie
My understanding a little wine helps with stomach problems. When I suffered most with IBS I tried to drink wine, but could never find any that I could tolerate. I'm a none drinker and could never get pass the alcohol taste, to me it's like drinking poision.