Vasculitis symptoms and conditions

i have been on neurontin for nerve pain in my legs due to vasculitis for a few weeks now. i have only noticed a small increase in appetite. my eyesite seems to be out of focus, but its so bad anyway that i have no idea if its the neurontin or just my eyes, and minor headaches i had no pain relief either........absolutely no improvement at all. my doctor just raised my dose from 900 mgs a day to 1200 the other day. still no pain relief but i am now getting a bit dizzy. i guess we will see what happens!

I had the Gardasil Shot in October 2007. I wasn't considering it by my Gyno recommended it as I was getting close to the cut off age. Since then i have developed a form of vasculitis where I have dark purple purpura all over my arms, legs, stomach and buttocks. I can no longer wear short sleeves and shorts in the winter. I don't recommend anyone getting this vaccine.

I originally posted about my 9 year old son on January 5th. Refer back to this for the symptoms. He had his upper and lower endoscopies on the 12th, and the lower showed numerous ulcers in the large intestine and at the beginning of the small intestine. The doctor insists that it has to be Crohn's disease based on just this and the blood work, which showed eosinophilia and elevated sedimentation. He is insistent that this has nothing to do with the Singulair and the dosage change. It's just a coincidence .... He' in the hospital for a week now. Watch for those stomach complaints! His started with poor appetite, complaining that he was full when he had hardly eaten, and vague complaints about eating giving him a stomach ache. It progressed to occasional diarrhea. It got worse quickly after that, just a few weeks.

I was placed on Pred. in November for vasculitis. I was given 20mg for about 7 days, then cortisone for several days, with great results. Then the vasculitis came back, to nip it in the bud, the doctor gave me 10 mg of Pred. which I took for 5 days, no step down. Now I have a very irritated tongue... red, inflamed, hard to eat, burns constantly. This is the only new med I have taken in months, so it has to be the Pred.

October 22, 1998 I had resp. failure (with intubation). My new pulmonary doctor put me on Singulair 10 mg once a day, a few weeks after. Within time, I started to have numbing and tingling in my face, arms, and legs. March of 1999 the symptoms worsened and started causing pressure in my face, arms, and legs, and anxiety started to kick in. I was told I had neuropathy and to take mobic. Symptoms getting worse, and went to a rheumatologist in June 1999, and he was suspect of singulair. The doctor thought that what I was experiencing was due to the singulair. He (the rheumatologist) discussed this with the pulmonary doctor and the pulmonary doctor did not believe this to be the case. Not forgetting, in March of 1999, I had a ct of the sinus area, and low and behold 1/3 of the cavity was and probably still is full of polyps.

As time went on, symptoms getting worse, and not one bloody doctor could figure out why I was feeling this way. In addition, at times, I was put on steroids for my asthma (not including my inhalers).

Two years ago, my body went into shock, leaving my left side very different than my right side. Affecting: my head, my face, my eye, my ear, my esophogus, my lungs, my arm, my leg.

I have been depressed and anxious not knowing what the heck was going on with me.

Recently ruled out thyroid, and lupus, and possibly ms.

Last weekend, I reviewed the letter from the rheumatologist (dated 1999) and the ct report from March 1999 (regarding the sinus/ polyps) and made copies to present to a pulmonary doctor that I have recently been seeing.

This past Monday the 10th, I had my appt with him. He knew of my situation from the last few visits (in addition, I had met him this past March for a pulmonary rehab program, and thought he seemed to be knowledgeable and compassionate). While waiting for him to enter the exam room, he had read those reports before entering.

The doctor looked at my hands (red as a beet and swollen) and said "You have Churg-Strauss Syndrome, and get off the singulair."

I had done my homework from a few weeks ago, where I looked up untreated polyps.
Untreated polyps, can turn into vasculitis. There are many types of vasculitis, to include Churg-Strauss Syndrome.

I then cross ref CSS and singulair, and low and behold, BINGO!

I have been suffering for ten years, physically and emotionally because of this drug!

There is also recent updates from the fda (fda.gov) regarding singulair, of which most recently includes anxiety and depression.

I suggest before taking singulair, be aware of the side effects. As soon as a side effect comes up, contact your doctor. Also, be aware of existing conditions (like me, sinus problems and asthma) for this could lead to churg-strauss syndrome.

This info is indicated on the actual disclosure (the paper insert that indicates studies, side effects, etc...) not the handout that is given with the drug.

By the way, I am now working with a new rheumatologist in Los Angeles (Cedar-Sinai affiliated) and a new neurologist.

mdklezmer

Has anyone experienced hives with Mirena? I had it put in about 7 weeks ago and now I seem to have broken out in hives on my arm. I have not experienced any other significant side effects so far.

I did a post a few days ago--but must add to it. I have SLE, MS, CAD, HBP, having 5 stents, asoteoporosis, arachnoiditis, cerebritis/vasculitis from lupus, chronic pain(fibramyalgia) and a bucn more that ill give u sum idea. I am also a RN for28 years and KNOW what medications can do. I mena come on lets face it--if we ALL read THOROUGHLY all the inserts with ANY medication--NONE of us wud take any of it. Even ADVIL and ASA have horrific side effect.!! I saw my doctor yesterday afternoon due to this rash--not my typical lupus reash---doesn't look like discoid lupus, it begins on my chest goes uop my face then all down my back then gradually works its way down my leg---it gets rasm, macular and some some end up with a popular looking area. The PAIN from if is almost as bad as the itch from the rash. I have had shingles and it is similar to that pain. I have been putting topical steroid base creams all over to no avail. I begged my doctor for the KENOLOG shot and discussed GREATLY the side effects: I have had a hysterectomy so that is nothing, it cause cause a psychosis, depression, panic racing thots insomnia--basically ALL the side effects everyone has mentioned---but IT WORKS -I JUST GOT UP AND THIS DIFFIGURING DISCUSTING RASH ALL OVER IS ALMOST 90% GONE!!!! Like I said I have been on steroids most of my life--and I KNOW the side effects of them--PERIOD. Educated patients READ the inserts and ask their doctors---all meds have risks but the questio is does the risk outweigh the benefit t
??????????? I am on a mediation that has you with an increase of 10-15% increase of having an heart attack--which I have had two--but I CHOOSE to take it becuz the benefit outweighs the risks. I understand 100% all the complaints concerns and everything, attorneys will NOT take cases where the medication is used and adminierted the correct way--esp. when the side effects are clearly listed. Doctors are TOO freaking bust these days to sit and TALK and explain every side effect with each of their patients. Does each of you know that the average physician HAS TO SEE at least 60---yes sixty patients A DAY???? That is actually in their contract--thata approximately 7 and a half minutes ith each of us.!!!!!!! Make a list of all ur concerns, questions etc for the doctor and I do this ---I manuaver my chair to in feonrt of the door and I DO NOT LT THE DOCTOR OUT until he has answered ALL my concerns---yea they get mad tell me I can't do that--and my response is is IF YOU can make me wait in ur office lobby for more than an hour--I will do what I have to do to get proper CARE!!! Shuts most of them up. But I am lucky I do have 6 of the most careling and compassionate physicians--I have lucked up--I have had my share of "stupid" doctors but-hey WE are the patient-=-go to another one until ya get one ya like. If you go to other website about medicine there are many more complaints and unhappy patients with medications they take. But I understand where all of US are coming from---Doctors are no different than us--and they are not GOD--they make mistakes and as long as they don't KNOWING harm you---or commit fraud--no lawsuit happening---now sueing the MAKER of kenalog MAY be a possibility( my sisiter is an attorny) thats her advice and itd have to be a class action suit and its kinda sad--patients don't ever get much in things like this but its worth a shot!!!

Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work.

Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression.

This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.

I just started 80 mg of Prednisone for Vasculitis in my kidney’s. I also have RA. This treatment is being augmented with low dose chemotherapy. The Chemo is nothing compared with the side effects of the Prednisone. It is Horrible. It has so messed with my brain I never knew what an awful existence obsessive compulsives live. I can’t sit still and stop doing things if there is anything left undone! I have trouble with controlling my emotions, responses etc. Thinking isn’t easy either. And I’m awake most of the night. (Not a bad thing since we just were blessed with twins however). But it is really straining my relationship with my 6 year old son who can’t understand why his Dad goes from nice dad to mad dad in a second. I’ve also have horrid muscle fatigue in my legs. For me this is the worst because getting up and moving and walking up stairs is almost impossible. And I was hiking up to 5 miles in rough terrain just a few weeks ago. I’ve actually LOST 10 lbs.

So I am wondering if anyone has any tips, tricks or ideas they have found to combat the muscle fatigue? It would be greatly appreciated if you could share any ideas you have. I’ve been drinking water and electrolyte replacements, (G-2, the new Gatorade) but that has not solved the problem.

Thanks.

I have read these sites and boy wait till you hear what i have to say. I had a very very severe reaction from levaquin one year ago. I had heart palpitations, nervous system was stimulated, joint pains. severe muscle twitching, firing in my neck and arms, my shoulder became locked. also I had anxiety sort of symptoms. I couldn't believe what was happening to me. I was not anxiety befor the levaquin. And balance problems I couldn't walk without tipping over. I still have this problem today but it come and goes. I have vasculitis (vascular spasms) all over my body. It effects my breathing, heart, and bowels. My blood pressure went up sky high and my blood pressure was not like this before. I am also sensitive to other medications. My body was destroyed from this drug! It belongs in HELL. Yes people need to know about this drug!!!!!!!!!!!!!!!!!!!

Here is my story first. January 2004 I gave birth to my third child. 36 hours later my bp was 220/125 Labatolol made my head tingle so badly it drove me insane, niphedipine made gave me tachycardia, where just standing up my heart rate was 171. HCTZ caused me to have vasculitis. My kidney issues are the main cause of my bp issues, but for the past year and half I have maintained a okay bp. Four days ago for some reason it all changed, My bp was 170/110. My dr put me on Lisinopril and I took my first 10mgs last night. I do have panic attack disorders and me not falling alseep till two am could be why. All the other symptoms you talked about I have already had PRIOR to starting my medication. I have joint issues, I have had a cough, I have GERD, already had loose bowels. I'm praying this medication works and its one that doesn't cause me any ill effects. So far after one day my bp has come down a lot. If I have a hard time sleeping tonight it might have to do with the medication. Until then I can't say anything bad. Also my boyfriends mother is on this, has been on this, and has had NO ill effects from it.

I had a stroke 4 yrs. ago and in the tests given it was found that I have Vasculitis. Dr. insists that a low daily dose of 4 mgs. per day will be fine. Have gained 45 lbs. Cheeks are puffy. Itching. Have tried using 2mgs. but sed rate is not good. Have accumulated fluid around the heart. Naturally this causes shortness of breath. Have any of you had similar problems?? Does anyone know an alternative drug??? Would appreaciate hearing from you.

I took 15 days of Avelox in March 2004. This was given with Prednisone (Medrol) which enhances the possibility of an ADR. I initially had lower leg and Achilles tendon pain, then sharp wrist pain. Paresthesia soon followed. I called my ENT who told me to quit the medication. Nevertheless, a couple days later, I developed a rash on my palms which looked like allergic vasculitis, and the paresthesia intesified. My GP suspected a drug reaction and performed CPK tests. CPK 3 came back elevated but later returned to normal. A couple weeks later, numbness developed in my toes.

A neurologist has so far diagnosed me with bilateral ulnar neuritis (nerve inflammation in the elbows), carpal tunnel syndrome, and tendinitis. There is also evidence of a peripheral neuropathy. I can no longer exercise, and it hurts to type. My hands are still red and inflammed.

ADRs to this drug are virtually identical to those of Levaquin. the drug is extraordinarily dangerous, and should be reserved for the most aggressive infections.

I have been on this drug for about 4 months. The cough seems to have gone away for the most part , but I have developed vasculitis. Has anyone had or does anyone know of others who have had this disorder due to the Lisinopril.
I am desperate for answers.
Randy

I took Levaquin from May 1, 02 until July 19,02 for an infected hip prothesis. I developed severe pain in my fingers, knuckles, hands, shoulders and TMJ joints. The Dr. said it would go away. As of May 9, 03 I still have the problem and am seeing a rheumatologist. He, through blood test said I have ANCA Positive vasculitis which is caused from taking Levaquin. The course of treatment is steroids. I took steroids and the raised havoic with me, and only made matters worse. His next course of action is massive doses of steroids. IV therapy for three days followed by 100, yes 100 days of taking 15 mg prednisone daily. He treated his only other patient with ANCA Positive and it did not work.
I'm currently waiting to get in to Mayo Clinic, Cleveland Clinic or University of Michigan Medical Center.
My question to anyone out here is if there is a class action law suit going against the manufacturer of Levaquin.
jcoleman@shianet.org