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View Full Version : Trouble improving while on Cytoxan?



catlady4520
12-01-2005, 11:27 PM
I've been on Cytoxan since July and only have 2 more sessions (I hope!). I have CNS vasculitis and started having seizures in April. After many tests including a lumbar puncture that was horribly painful, my rheumy found I have lupus. It seemed like it was helping me to improve but in the last month, the severe headaches have returned as well as I've broken out in a severe rash on my legs.

When do lupus ever go into remission or is it possible? Getting very discouraged as I'm trying to keep my job but have to be on my feet alot and very miserable with the headaches.

Any suggestions about help with the headaches? It seems my dr has prescribed so many different things as well as my neurologist keeps changing my dosage for the seizure meds. Let me know, I need help right now!

Saysusie
12-05-2005, 01:44 AM
Hi Catlady4520 :lol:
Prolonged remission is rare in people with lupus, but it can happen! It is believed that those who achieve prolonged remission were less likely to have been on corticosteroid or immunosuppressant therapy, and less likely to be anti dsDNA antibody positive (a blood test that indicates the presence of lupus) and also had a lower level of disease activity over time. Doctors now believe that, rather than achieving prolonged remission, patients are now able to achieve disease suppression that may last for prolonged periods - meaning that treatment and medications may still be necessary, but flares and activity are supressed.
Many lupus patients, myself included, have achieved remission for prolonged periods where we need not take medication for the disease. So, to answer your question: Yes, remission is possible but not promised!

Headaches are the most frequent CNS manifestation for lupus patients. The Lupus headaches are either vascular (such as migraines) or muscular. There is some evidence that there is an association between the vascular form of headaches and the presence of Antiphospholipid antibodies (ANA). There is also indication that the vascular headaches correlate to the activity of Lupus. Unfortunately, there is no single treatment that seems to work for all lupus patients with these headaches.
Most lupus patients have incomplete migraines or ocular migraines and we suffer more often than those who do not have lupus. An incomplete or ocular migraine is described as beginning symptoms, common to migraines (such as visual disturbances), without the actual headache.
There are many different ways for treating migraines. Migraine-specific medications as well as antidepressants, which adjust serotonin levels, are often prescribed as preventative treatment. Heart medication such as beta blockers and calcium channel blockers are also used for migraine prevention. Sometimes seizure-controlling medications are used to control serotonin levels and minimize migraine occurrences.
One of the most commonly used class of drugs for migraines are serotonin receptor agonists, also known as triptans. These drugs reduce the pain of migraines and symptoms, such as auras. Brand names for triptans include: Amerge, Maxalt, Imitrex, Zomig, Axert, Frova and Relpax. They can be administrated in a variety of ways: orally, nasally through a spray and by injection. The fastest acting and most effective may be the injectable form.
For prevention of migraines, beta-blockers, which stop blood vessel dilation, may be prescribed. Beta-blockers include: propanolol hydrochloride (Inderal), atenolol (Tenormin), metoprolol (Lopressor), nadolol (Corgard) and timolol maleate (Blocadren).
Calcium channel blockers are also used to prevent migraines. They usually work slowly, taking from two to eight weeks before any improvement is seen. Common calcium channel blockers include: verapamil (Calan, Isoptin), nifedipine (Procardia, Adalat) and diltiazem (Cardizem).
I hope that I have answered your questions :-)
Peace and Blessings
Saysusie

catlady4520
12-05-2005, 11:49 PM
Thanks for your words of encouragement! Just so darned frustrated. I thought after almost finishing my course of Cytoxan that the headaches would go away. They did improve for several months but about 3 mos ago, they started back again and this one has lasted for over a week. When I had Cytoxan this last Sat, the pain was so bad I just wanted to scream. The nurses tried giving me tylenol but told them it doesn't work at all for me. They were about ready to call the on-call dr but he's the first rheumatologist I saw years ago before I got in to see my current dr. Quite frankly, he's a jerk! He told me years ago in some many words that my symptoms were all in my head (guess he was right - literally!!!) So I suffered through the pain until I could get outside where it was much cooler (we were in the middle of a blizzard in Colo Spgs) and took some Excedrin Migraine which did finally take the edge off it.

I see my rheumatologist in a month. I also read in a lupus book that patients with Raynauds tend to have more headaches than other people. I didn't start having headaches till the seizures started in April. It's just been rough all over...we have had days in which the highs are only in the 30's and heard we have a blizzard coming tomorrow. With the joint pain, it's like sheer torture to have cold weather. My dr. is prescribing Percocet for my headaches and it helps somewhat but don't want to get hooked on it. She prescribed it for me in June/July when the headaches were really bad at the start of my therapy. Just praying that I can hit remission...I know there are people much worse off than I am but I've always been so independent and so focused on my career. Now I have be constantly reminded about my health when my joints/head hurts. Oh well..I know it could be so much worse, so just thankful my dr. caught it in time. Thanks for your help!

Saysusie
12-07-2005, 08:25 AM
Hi Catlady :P
I truly understand what you mean about the headaches - I still get them (much to frequently for me to mention) and, like you, my doctor's and I have tried many different treatments and therapies...but, I still get them :evil:
I want to respond to what you said about "Going Outside". I have found that when the migraine is unbearable, if I sit outside for a period of time, it actually seems to soothe the unbearable pain (sometimes, as soon as I go back inside, the pain increases again). So, I often find myself sitting in the frigid cold (yes, even with my Raynaud's and joint pain) wrapped in 3-4 wool blankets waiting for the medication to kick in, for the migraine to subside or for me to just pass out (any of the above are generally acceptable).
I hope that you are able to find some relief, especially since this one has been lasting for over a week now. I wish you the best.

Peace and Blessings
Saysusie