After being sick for five days I finally couldn't stand it anymore and went to the ER. It is sort of like flu symptoms but without a fever: waves of faintness (that darkness you get around the edge of your vision) and anxiety, stomach pain, yellowish diarrhea, headache, pain behind my eyes, my arms & legs feel weak. I thought perhaps I had the flu, or low blood sugar, or was anemic -- but my real fear was that it was the plaquenil. I've been on a dose of 200mg for 3 1/2 weeks and am just starting to notice a slight improvement in my mouth pain
The ER doc checked me over: pulse & blood pressure good, EKG good, blood work good.
The only thing he could guess causing my illness is the plaquenil. He looked up the drug and said that my symptoms match all the possible side effects. I'm supposed to stop taking it and call my Rheumy on Monday. He wasn't sure how long it would take the medication to get out of my system to see if that helped me feel better.
I can't believe this!
What will the rheumy do? (he is 4 hours away, so it will just be a phone conversation) Is there a "test" to see if the plaquenil is the culprit? Could the ER doctor be wrong? (he freely admitted that he wasn't familiar with plaquenil but couldn't find anything else wrong with me) Would a smaller dose help?
What if I have to stop taking it?! Is there another drug that can help or am I doomed?!
I just want to cry!! It seemed like I was just starting to see some results!
Deb
I heard there is one other medication, but I don't know what its called. There are also corticosteroids, but I don't know anything about it yet. I may have to go off Plaquenil also, so I am just starting to investigate. I share your concern - I hope there is another med out there.
Deb
I'm so sorry this is happening to you. We all lay so much store by Plaquenil, that to find it doesn't suit is like losing hope. I pray that you will feel better soon.
Kathyx
Please do not be so concerned about not taking plaquenil. If you have neuropathy, plaquenil is an itch inducer. If you are negative on ANA, I would seriously pursue a skin biopsy for neuropathy, because what you describe is exactly what dysatuonomia feels like....then again, there isn't much they do for it and Plaquenil isn't for neuropathy pain. Depending on the CAUSE of your Sjogren's or Sicca Syndrome, Plaquenil may not even help at all.
There are other drugs if you have inflammation....lots of them.
I hope you feel better soon. Usually IV fluids help a lot.
There are alternatives that you can take.
Joe & inga: There ARE alternatives? Thank goodness! I googled for substitutes for plaquenil but nothing came up.
Does anyone know how long it takes the plaquenil to get out of your system? I've already missed several days of work and would like to shake this soon. I'm tired of being sick...
Thanks for the info and good wishes, everyone.
Deb
I had the same symptoms after 4 weeks of plaquenil. The rheumy said to stop taking it. No problem quitting. The new rheumy has not suggested a replacement yet.
The same thing happened to me but it was after taking methotrexate. I still do not know for sure if it was the drug or not. I feel your pain. Hang in there. Wally
Magnesium, Flaxseed, Inositol, Goldenseal, B12, D3, Alpha Lipoic Acid, Acetyl L Carnitine, Reiki, Reflexology, Meditation, Carrot Juice, Tonations
Joe
I don't want to sound to stupid, but could you breakdown all the things in your last post and tell me what they are good for. The Reiki, what is this and how do you do it, what is it good for? I know I am asking alot but would greatly appreciate it. Cricket
Why can't it just be a virus? Most that posted here having problems with plaquenil had side-effects right away...not 3 weeks later.
The ER doctor didn't think it was a virus because I haven't had any fever.
I googled the side effects of salagen (which I've been taking 4 weeks) and noticed that it also has side effects similar to what I've been experiencing: dizziness, weakness, stomach pain, headaches, etc. Man...how am I supposed to know what is causing this? I don't want to stop taking everything. For the first time in months I finally have some saliva and snot!
And all this has caused my panic attacks and agoraphobia to flair up again, despite being on Zoloft (or else my symptoms now include something that "feels" like panic). A rush of fear wakes me in the morning and I battle it all day too. egads...I'm a mess physically, mentally and emotionally. I wish I didn't live alone...
At this point I don't know if anyone is still reading this thread, but I must confess something humiliating. It actually felt good to be in the ER. I hate/distrust doctors and consider hospitals a scary place. But I have been feeling so sick and scared... My nurse was kind, and it felt good to be helped onto a bed and covered with a warmed blanket. It felt good to have experts checking me out instead of being home alone with a computer trying to self-diagnose. It felt good when the nausea medication took away the stomach ache I've had for five days. And it felt so darn good to lay there knowing that if I pushed the call-button that someone would come. How pathetic is that...?
I am sobbing so hard I can hardly see the keyboard. I was terrified to start all this new medication but I gathered my courage and shoved them into my mouth -- and it actually seemed to be starting to help my SS symptoms. Then out of the blue I get so sick I can barely function and the ER doctor is only guessing that it is caused by the new medication.
Sigh... Okay. Time to buck up again. Time to wipe away the tears and keep trying. Time to count each little blessing (such as, for a change, I actually have tears to wipe and snot to blow) and remind myself that there are people who love me, even if they aren't in the next room hooked to a call-button. But God, it's hard.
I certainly couldn't admit this to anyone in person. If anyone is still reading this, thanks for listening.
Deb
Deb
Sometimes it's nice to just feel like we are being taken care of, so i understand your feelings.
I would only stop one of the meds at a time (which ever one is helping the least) and see if your side-effects subside. If they do, then it was likely that medicine. if not, then it might be the other. If you STILL have problems, then it was something else.
I would still touch base with your GP for his advise.
I wouldn't think that all stomach bugs have to include fever. I hope what ever it is, that it resolves soon.
Take care,
Anita
hey Deb
I was reading your posts and i relate. i do hope you get to feeling better. i am so so sorry..
i am glad you went to the ER. that does suck about plaquenil..i too have just started it about 3 weeks
ago but have only moved up to 200mg... i have been having dry eye flare ups.. not sure why..
anyway, i went to the ER this summer when the heatwaves struck and i was severely dehydrated and i too
felt "GOOD " being inthe hospital. doctors and nurses taking care of me.. i felt "safe"..
it is scary--and sometimes the more we get on the computer the more confused we get.. you said you
go to a Rhemy 4 hours away? My eye specialist is over 2 hours away .. and of course i have to be driven
there..it is so frustrating.. feel free to message me ...
i hope you get to feeling better soon.... From what i have heard you can just stop taking plaquenil.. i would
assume it would leave your system fairly quickly
Our immune systems are already haywire. To me, not having a "typical" immune response to something (in your case, a virus) would not be noteworthy enough to rule something out if it was going on in my body. I've had plenty of episodes of illness where I didn't spike a fever, and other instances where I have.
And if my doctor says he doesn't know about a drug and has to look it up in a book just like the rest of us, I would be extremely cautious in following the advice to alter the dose. You know you've had difficulty with fears about this drug. We all know it here too, and that's OK.
But I would caution you not to let this fear ultimately undo the good you could be doing for yourself.
Yes, there are other treatments, as people have posted. In my opinion, you need to come to terms with your fear of this medicine so you can help yourself through this. It MAY be the plaquenil. Obviously others have had tolerance issues. But you're prone to becoming a self-fulfilling prophecy this time and a truly objective opinion from someone who DOES know what the drug is would be much better for your health and sanity, in my opinion. You truly need to explore this fear either yourself, or with a counsellor or other advisor you can trust.
There is no shame in feeling relief and comfort that others are available to take care of you. Many of us, I'm certain, wish for just one day of being able to lay there with people who care surrounding us and available while we have one job, to rest so we can heal.
Be strong, Deb. Take a breath. Stop googling :) Call your rheumatologist. Seek some peace. Pet a cat. Whatever it is that brings a balm to your heart and mind. We're here for you too. B R E A T H E.
Magnesium (Mg) Symptoms: Fatigue. Vertigo. Convulsions. Heart attacks. Palpitations. Bed wetting. Kidney stones.Tremors. Nerves. Seizures. Hyperactivity. Weak. Best sources: Soya beans. Nuts. Whole grains. Brewers yeast. Lobster/shrimp. Seafood. Dried fruit. Green leaf vegetables. Notes: Improves retention of urine, tooth enamel, energy & Vits. E & C utilization. Used to treat kids hyperactivity
Flaxseed An alternative source of Omega-3
INOSTOL 500-1,000 mg Symptoms: Dematitis. Hair loss. Hypertension. Constipation. High blood cholesterol. Best sources: Lecithin. Liver. Nuts. Wheatgerm. Brains. Brewers yeast. Whole grains. Beans. Notes: With Choline vital for brain function. Nontoxic. Combats eczema and stress. Takes weather out of your pain cycle.
GARLIC (Allium Sativum)
USE: Bulb.
FOR Gas* - Colds* - Liver - Croup - Warts - Fever - Sore throat - Ulcers - Thyroid - Ringworm - Increase appetite - Migraine - Cholera - Hemorrhoids - Food poisoning - Dissolves arterial plaque* - Cleans blood - Acne (int.) - Emphysema - High blood pressure* - Catarrh* - Diarrhea - Colitis - Constipation - Kids diseases* - Cramps - Depression - Heart* - Venereal disease - Rheumatism - Cough - Longevity - Vagina - Prostate - Digestion - Gall bladder - Flu - Cholesterol* - Aphrodisiac (men)* - Ring/Thread worms* - Arteries* - Sinus - Insect stings/Bites - Dysentery - Cancer - Blood sugar control - Intestine tonic - Circulation* - Yeast infections.
NOTES: To lower blood pressure use with Cayenne. To discourage external parasites, wear in bag around neck. Some swallow cloves whole (peel & cut off sharp ends) for colon & worms. Encourages friendly intestinal bacteria. Eat with parsley to reduce smell. Antiviral, antibacteria, antifungal. Harvest when leaves start to whither. For infections use with echinacea. Doses from 1 clove to 2 lbs./day. 5,000 + year use history.
GOLDENSEAL (Hydrastis Canadensis)
USE: Root.
FOR Liver - Burns - Flu* - Hemorrhage* - Catarrh* - Sores (external)* - Spleen - Earache (external use with mullein) - Burns (external) - Uterus - Sore throat (garg.)* - Eczema (external) - Flu/Colds* - Colon/Bowels - Tonsils (garg.) - Prostate - Digestion (use with chamomile)* - Itch/Rash (comb. w/distilled witch hazel [external]) - Circulation* - Bad breath - Nosebleed (sniff)* - Improve appetite - Bronchitis - Constipation - Sinus* - Inflammation (external) - Eczema (external) - Gall bladder - Antiseptic* - Kids diseases - Conjunctivitis - Water retention - Morning sickness - Hay fever - Venereal disease - Mouth/Gum sores (garg.) - Ulcers - Anorexia - Cancer - Rngworm (external) - Helps Mucous membranes* - Thyroid (low) - Lymph - Hemorrhoids - Insect repel (external) - Kidneys - Allergies - Nausea - Nerves - Vagina - Cuts/Woulds (external)* - Psoriasis - Bladder - Obesity - Period flow (dec.) - Eye wash (use with eyebright)*.
NOTES: Works well with other herbs. Don't take if pregnant or have hypoglycemia. A powerful healer (natural antibiotic) but use in moderation and not long-term.
PEPPERMINT (Mentha X Piperita)
USE: Aerial parts (& oil)
FOR Colic* - Diarrhea - Insomnia - Bronchitis - Bile flow - Improve appetite* - Nose/Throat - Colds/Flu - Vomiting - Antiseptic - Nightmares - Congestion - Stress/Worry* - Palpitations - Circulation/Heart - Rheumatism (external oil) - Anesthetic (mild) - Morning sickness* - Nausea - Smoking - Migraine/Headache* - Fever - Dizzy - Gas/Flatulence* - Period pain - Heartburn* - Muscle/Gut cramps - Digestion* - Skin ailments (external) - Pain - Liver - Tonic - Cough - Kids' diseases - Gall bladder - Itchy (external)
NOTES: Very good for nervous stomach (i.e. swallow air). Combine with elder to sweat.
DANDELION (Taraxacum Officinale)
USE: Mainly dried roots (but fresh leaf used in salads).
FOR Acne - Anemia - Energy - Cancer - Spleen - Skeleton - Insomnia - Digestion - Heartburn - Kidneys* - Cramps - Jaundice* - Gall stones & bladder* - Builds blood - Tonsils/Flu - Diabetes - Age spots - Cleans blood* - Fever - Rheumatism - Gout - Skin ailments (incl. spots, boils, eczema, etc.)* - Constipation - Pancreas - Improve appetite - Bronchitis - Fractures (bones) - Hypoglycemia - Old age - Hemorrhage - Water retention* - Liver* - Wounds.
NOTES: Efficient remover of acid/toxins from blood but does also raise blood pressure. For liver/gall bladder combine with yarrow. Suitable for kids & as general tonic.
B12 (Cyanocobalamin) 5 mcg Symptoms: Breathlessness. Heart palpitations. Sore smooth tongue. Feeling weak. Apathy. Degeneration of memory. nerves, brain, spine & premature Best Source: Eggs. Oyster. Clam. Liver. Milk. Cheese. Kidneys. Spirulina. Fermented soya beans. Pollen. Sea vegetables. Most animal products. Notes: Considered nontoxic. Strict vegetarians may be deficient. Used to treat shingles, alcoholism, asthma, allergies, insomnia, fits, hepatitis.
D3 this is what you take D for.
Acetyl L Carnitine: repairs mitochondria DNA
Alpha Lipoic Acid: Removes debris from repair, reverses neuropathy.
Reiki: hands on energy healing
Reflexology: Triggers endorphin release to various parts of your body.
Meditation: helps in controlling pain.
Carrot Juice: gives your body what it needs to produce endorphins
Tonations:
Dry Mouth http://www.chakraforce.com/Tonations.html#26.
Dry Eyes http://www.chakraforce.com/Tonations.html#326.
Fibromyalgia http://www.chakraforce.com/Tonations.html#329.
Arthritis http://www.chakraforce.com/Tonations.html#212.
CFS http://www.chakraforce.com/Tonations.html#330.
Yes, Deb, B R E A T H E.
slowly
regularly
My heart goes out to you. You will find a way around or through this.
Keep us posted.
Kisses
Elaine
I have low K, low Ca and low vit. D....one would think it is as simple as taking those...IS ISN'T.....without correcting the bicarbonate, the calcium ends up plugging up the kidneys, the K goes down the drain and the Vit D does more harm than good.
Dee, what is your ANA, and ENA, and is your crp and sed rate elevated?
Deb, It is not unusual for people with autoimmune diseases to not run a fever. I haven't run much of a fever for years and doc says it comes with the territory.
Also, I don't blame you one bit for enjoying the attention that you got in ER. You are in need of attention. It is a human need and when one gets sick this need is even greater. It sort of takes the pressure off to have someone else helping you deal with all this.
I don't know if you have relatives close by or not but it might be helpful to move closer to people you know and could depend on. Also, it might even be nice if you could dfind a roommate if you have enough room. I would certainly go through a church, etc to try and find someone who would not be living a wild life. That is the last thing you need to put up with.
The other thing I am wondering is if you work full time. If you are home a lot it might be nice to call the county public health/social services department and hire someone to come one to two times a week for a few hours to help around the house and be there for support. Many health insurance policies pay this. Also, I don't think that the fee for a couple hours once a week would be too terrible.
I really feel badly for you and wish there was some way you could move to an area where there would be more people for you to have in close proximity Assistant living facilities can be nice and you pay for the room and whatever services you need. It can get really spendy, but maybe there are some out there that might not be much different from what you pay in rent. Good luck and my prayers are with you. Irish ;D
AMEN to Irish.
Elaine
I understand completely the nice feeling in the ER. We push so hard just to make it through the day and we take care of so many people pretending we're fine. The people around you have no idea what getting through the day is like for you. That's why you get that "AHhhh" feeling in the ER. You don't have to pretend your're fine and someone is actually taking care of you while you're lying under a warm blanket. They take the pain or difficulty breathing or whatever sent you there better. You're also forced to stop everything. You have to take easy. If we take it easy and pamper ourselves occasionally, maybe we wouldn't end up in the ER so often. Maybe.
I've taken 200 mg of plaquenil for a long time without reaction. I would think you'd have a reaction before 3 weeks. Who knows. I hope you can find an alternative, because plaquenil really makes a difference.
Thank you, Irish, Elaine and everyone. I'm glad my reaction to the care I received in ER didn't sound too pathetic. Everyone around me considers me a strong, confident, funny woman -- and I try so hard to live up to that image. But right now, I sure don't feel that way on the inside.
Several people have mentioned that they don't usually run fevers with SS. Perhaps I will be lucky and this will turn out to be just a bug after all. For now I will wait to hear back from my rheumy. And I won't rule out trying the plaquenil again when/if I get feeling better.
I don't want to give the impression that there aren't people in my life who love me. My husband has worked and lived in Michigan for two years and he visits every-other weekend. I remained here with our youngest son so he could graduate from his own high school. The boy graduated this spring and moved up with his dad in May. So, I've only been 'technically' alone for six months (although living with an 18-year-old boy without his dad around for two years hasn't been easy).
I will be moving to join them November 1st. I will be so glad to be with them -- and yet everything concerning our family and this move has fallen on my shoulders. I handle all the finances. Our house & farm still hasn't sold (and paying for two living spaces is a huge financial burden). I'm stuck with the packing and arranging an unbelievable amount of tiny moving details. I work full time at a library (which I love) and am sad that my last day is coming soon. I care for my elderly parents and must find a place for them in Michigan (both are legally blind, mom is in an assisted living apartment and dad is in skilled care after suffering a stroke last month). I'm sad to leave my oldest son and his wife, our church, my friends, my home.
It's just all so overwhelming when you don't feel good and are exhausted.
The caring emails, good wishes and prayers I've received here have been a God-send. Thank you all so much for your support. I hope I can be there for all of you too.
Deb
Wow you have got a lot on your plate! It may be that once the move is done and you have settled in, both the disease and the reactions to medications will calm down a bit. The stress alone can aggravate both. Here's hoping your house sells soon, you find a place for your parents that you are comfortable with, and the huge list of tasks in front of you isn't so huge anymore.
Genko
Wow, Deb - You sure have a lot on your plate! I wish you the best with your move north to Michigan.
I have had problems with diarrhea for many years. My anxiety problem exacerbates it. I had my gallbladder removed in July 2009. The diarrhea got worse. I started plaquenil a year ago. I thought the diarrhea couldn't possibly get worse - but it did! :o
My rheumy told me to stop taking the plaquenil to see if that helped. He said if it did, he wanted to put me on Imuran. Perhaps that's the med that someone said is used instead of plaquenil. I checked out the possible side effects of Imuran and wasn't too anxious to try it. That stuff sounds nasty - and I was leery of starting plaquenil because of the blindness thing!
I hope you find out the source of your problems and that it's not plaquenil.
God bless.