Madwolf, Ac77 Confused & Worried ...Help !!!!!!

Discussion in 'Fibromyalgia Main Forum' started by KathiM, Apr 14, 2003.

  1. KathiM

    KathiM New Member

    I have Fibro & severe sleep apnea and ????? (Dr.isnt sure) but is suspecting lupus as the clinical signs were are/there joint pain, muscle weakness, red face, , fatigue......

    My sed rate was 70 but ANA all came back neg. on March 12 Rheumy made the decision to do a trial & put me on Plaquenil 1 x day and 10 mg prednisone per day (which I cut down to 5 mg after 5 days as I was going crazy) (and the past 10 days had cut that to 2.5).

    I really felt good..........joint pain was almost minimal...muscle weakness was improving and was just very slight......I was doing things I had not been able to do before........fatigue had improved. On the 29th day of being on them (a week ago today) I noticed a rash starting on my arms........for the past week it has engulfed my arms from top of wrist to just below shoulder and is red and flaming hot and somewhat bumpy. This is also on legs from ankles up to knees but more dotty and pimply.The rest of my body, stomach, chest etc, is somewhat itchy but skin appears normal,no bumps, just slightly red looking.The scary part is that I am not seeing any improvement at all.
    I took it upon my self as of last wednesday to stop both drugs and on Thursday Dr. agreed during a phone call(he was out of town) and told me to be in his office this morn at 9:00.

    WELL..............................He looked at it.....felt my arm..........and said " I have no idea........I am not a skin specialist and I want you to see a dermatologist (I now have an appointment on next Monday)" He kept saying he does not know what I have nor what he is treating or dealing with but that sometimes "these things" play hide and seek (dont know what he meant by these things ....He said " I have seen plaquenil enough and I just dont think that is the problelm....... You were only on it 30 days....blahblahblah..........I would like to see you start retaking it and also the prednisone @ 5 mg per day".
    "It seems that we made improvement with it so far and I want to hope that the two drugs were the reason".

    He just would NOT address the rash............which I have been in HELL with for a week.......Just for your info....I am 47 and have always had excellent skin..very fair ...and take really good care of it !!!
    I guess my question is : I feel very apprehensive to start to retaking the meds with this rash or am I being silly ???
    I did not take any benedryl or anything before this and am wondering if I should do that now ???
    Also wondering if I should 86 the DR....?????
    My husband & I really like him but .....at this point.......

    Also guys.I have been doing research on Antibiotic Protocol....what is your opinion on it ????
    ALso have been doing some research on Dr. Franco @ the Arthritis Center in Riverside , California and I guess he is into the AP. Any feedback on that ????

    I apologize for a long post but I am mentally frazzled tonight and dont know what is right or wrong at this point not to mention the need to sit in an ice bath.

    Madwolf, I know you answered me before this past week about rash and you suggested getting to the Dr.... well.....now what ...haha!!!!!!!! This Dr just really perplexed me today.............

    I am looking for a bridge to jump off of but we dont have bridges here in the desert !!!!!!!HAHA ....

    Your input will be GREATLY appreciated !!!!!!!!!

    Thankyou

    KathiM
  2. judywhit

    judywhit New Member

    am very sure that one of the side effects of plaqueinil is a rash. Doc put me on this drug too and I stoped taking it. Did not agree with me. Will be interesting to hear from the docs on this one.
    Judy
  3. AC77

    AC77 New Member

    Sorry if I don't answer all your questions: I am skimming posts as best I can.

    Lupus will cause a rash, as you may know. Prednisone generally will suppress an allergic reaction type rash but not at the 2.5mgs you are on at present. I would definetly see that Dermatolgist. They can tell you if it is Steven Johnson's syndrome--as serious disorder--doubtful you have it as it has many other symptoms. I would, at your doctors advice, get back up on the prednisone (unless you might be allergic to that) for a few days too see if it goes away. This sounds pretty severe. Without seeing it, I could not really venture a guess. If it starts to hurt get too the ER, just too rule out other severe skin reactions or internal allergic reactions from meds or disease. Try and go between 9-5 when specialists tend to be in the ER and prepare for a good wait and lots of blood work. Try not and eat for 12 hrs before going. Not too scare you...Just a little FYI. I am a new Dr and tend to be over cautious :)

    Try some Benadryl at night too see if it helps with any itching, it also will help assist in seeing if it's an allergic reaction. If you can't take Benadryl, Allegra would be my second bet. Warm Epsom Baths followed by a cool shower along with an OTC pain killer may help with the symptoms.
  4. layinglow

    layinglow New Member

    Hi Kathi,
    I just began a new regime a little over a month ago. Suddenly after taking my meds in the a.m (a week ago Sat.) I broke out in what looked like a chemical burn, bright red, burning, and itching at the same time, but too painful to scratch) no blotchiness, but full coverage. I immediately went off all meds I could that would not be detrimental (cold turkey) like my Blood pressure meds, Klonopin, etc.
    I spoke with the Drs. office, telling them what I had done over the weekend, and that my plan was after the skin returned to normal I would begin very slowly taking ONE med or supp for a week, to check for reaction. Working my way back through the list. This was okayed by them.
    Quite clearly both our cases would indicate allergic reaction in my book. Until we restart the meds, though we will not find out if they were the offending culprit. Many develop Multiple Chemical Sensitivities with these disorders. It is possible it could have been something else, but I am always suspect of the meds, first. I don't think you should reintroduce both of these at the same time----but do the eventual route, too.

    I have had allergic reactions in the past, to foods and meds, and keep benedryl capsules on hand. With a couple of food allergies I have had swelling of tongue, and what feels like closing of throat with difficulty breathing. My husband runs for the medicine cabinet, gets out the benadryl capsules, opens them and poors them in my mouth, for a much quicker dosing, than waiting for the caps to dissolve. I would suggest keeping benadryl on hand.

    My skin finally came around and I began the vitamin b12 injections yesterday--as this was the thing that I feel was helping me feel the best. So far so good.....I will see how that goes for a while, after I build some more up in my system.

    Best wishes...go with your gut instinct on this Kathi....don't restart until you are comfortable...and do so carefully, introducing one at a time. My guess on this would be the plaquenal (sorry spelling...brain goofy tonite)...you might try a half dose of this when you restart to be on the safe side. I know how irritating this is ...when you find something working...and then this happens...
    LL
    [This Message was Edited on 04/14/2003]
  5. KathiM

    KathiM New Member

    I did take benadryl last night........
    It didnt help much.........

    Thanks for all your replys !!!!
  6. AC77

    AC77 New Member

    Is your rash getting worse, better, or what?

    Has it increased in pain and or itching. On a scale of 1-10 what was the pain when it first started and what is it now? The same applies to itching? I am a little concerned, as it doesn't sound allergic to me. I am just getting this "sense" that maybe you should head to the ER if it is covering more than (2 hands in total size). Prednisone and Benadryl should take care of even the most severe of allergic reactions. Do you have a "butterfly" type rash on your face? Or any Pigment changes?

    It's hard for me to get a picture of it. I would definetly seek some assistance. Report all the things you have taken and when and dosage, to the staff. A dermatologist will know. Believe it or not Dermatology is one of the hardest fields of medicine. I was told that and never believed it. But for anyone who has ever been to a deramatological doctor, I bet you found him/her very cocky, even more so than an internist or other specialist. They tend to be abrubt and "know it all" NOT all but I find it kind of funny some of my colleagues have pointed this out also. I guess there is a lot of study of skin disease and it is actually one of the harder fields of medicine. Please don't be intimidated by him/her when you see them.

    And BTW do you have any other new syptoms?

    [This Message was Edited on 04/15/2003]
  7. Suz15

    Suz15 New Member

    Hi Kathi,

    I started the plaquenil, about 2 weeks ago. Ive been having problems for about two years.Same ole stuff, sore muscles, joints, fatique and so on and so on. Docs werent sure what it was, all the blood tests were coming back neg, then like you, they tried me on the prednisone and wham,,I felt great. Doc weaned me off prednisone, because I just didnt like what I heard about side effects. Then they ran another bunch of blood tests Recently two tests have ""indicated"" lupus, my c3 and c4 were both low and they decided to try the plaquenil Both the doctor and the pharmacist warned me to watch for two major side effects of the drug. 1.damage to the retina, my rheumy insisted I go to eye doctor and have retinal exam BEFORE even startig the drug and then every 6 monthes thereafter. 2.Rash. A rash is very common when taking plaquenil. Ive got two friends that tried to take for rheumatoid arthritis and they got the blisters and the rash. Maybe if you called your pharmacist??

    Thx Suz
  8. paulajo

    paulajo New Member

    A couple years ago I had a severe rash and itch on my upper body, especially my arms. It got worse after I had been in the sun more than usual. I was suicidal!!!!! I went thru several docs and steroids, then a dermatologist (who diagnosed skin lupus) and then I finally called my rheumatologist. He said it was a reaction to Plaquenil and to stop the Plaquenil and that the skin lupus was probably not a true diagnosis (he reviewed the test results). The rash went away gradually (thank God) and have not returned.

    Don't know if that helps . . .

    pj
  9. KathiM

    KathiM New Member

    I have not answered any of you as I have been in bed so sick......101 fever since yesterday.

    Like a dummy I did what Dr told me and took another Plaquenil Tues night and woke up yesterday not feeling good and by yesterday afternoon in bed with chills and fever.

    Regardles of what Dr says.........I am convinced it is the plaquenil. I must be highly allergic to it not to mention how toxic it is to start with. The funny thing is how it took 28 days for it to happen and then to make me so sick just with one pill after stopping them 5 days ago. The headache is sooo bad.......like nothing else I have ever had. I truly wondered if I was going to make it thru the night..........hubby has stayed home all day to take care of me.......poor guy....

    I am fading agin..must go


    Kathim
  10. JLH

    JLH New Member

    I don't know where you stand on your rash now, but anytime you have a rash, or what you think is an allergic reaction to something, I would immediately take some Benedyrl, unless you are allergic to it!

    If you have a type of rash that keeps "growing," take an ink pen and draw a circle around it before you go to bed. If, when you get up the next morning, it has "grown" an inch around our ink pen line, you need to call your doctor. Sometimes a rash might be a skin cell infection called cellulitis.

    I, too, have Lupus in addition to fibro and take Placquanil. This does not sound like a Lupus rash, but a reaction to the med. I take 2 tablets of Placquanil every day and have never had a problem. I do know that it takes weeks for it to build up enough in your system to become effective. Maybe it needed to build up enough in your system to cause a reaction.

    Knowing you felt that the med was the cause of your rash, you should have trusted your gut instinct and NOT taken any more of the med even though the doctor said to until you could get in to see him. Sometimes we must do what WE think is best for us.

    Also, it is NOT a good idea to stop all of your other meds cold turkey. Especially meds such a blood pressure, heart, anti-seizure meds like Neurotin, and many many more -- that could be very dangerous! Before you stop any meds cold turkey, call your doctor's office or local pharmacist for advice.

    Regarding the post about a Dermatologist being one of the hardest branches of medicine -- I don't think that's true unless you're talking to a dermatologist!! LOL One thing that is true it that Dermatology is one of the hardest specialities to get accepted into when you graduate medical school. This is because your competition is so great -- which is because a dermatologist makes a lot of money, does practically no hospital rounds, has very little emergency calls, and can practically work a 9 to 5 job like everyone else (while making the big bucks)! Since there are so many med school grads that would like this type of life, the Dermatology residencies are touch to get, so they end up getting the "best of the class" in this field. That is why these docs are so cocky. The field of Dermatology is not harder than say, Oncology. Another specialty that is the same as dermatology is anaesthesiology. Just thought AC77 would like to know how other medical schools view these type doctors (my daughter is a doctor).

  11. AC77

    AC77 New Member

    Always so witty. That must all be true. I never applied for dermatology, of course I am required to do a rotation in it. I agree it seems easy on the surface (no pun) but keep in mind the skin is the second largest organ and there are many types of cancer, rashes and reactions only a dermatologist can diagnosis. Granted 90% of the time they are most likely giving accutane to teens and and treating acne rosacea and other easily treated skin maladies.

    Internists just refer when there is anything that is mildly mind boggling. And psychiatrists.. HAHAH I wont tell you about what we call them! I respect almost all branches of medicine.

    BTW Kathim why aren't you at the ER!!! tisk tisk. An allergic reaction doesnt have to start immediatly. An example is penicillan. Many people take it for a while only to suddenly develop severe reactions and then there after, they will be allergic to it. Only one pill will set of thier reaction from then on in. This sounds similar to your case. Please play it safe and dont wait this out at home. No one wants to see a dead board member. Once again, not to scare you or seem harsh but I want to see you get some treatment. Am I being over protective? I would rather be, than see you in worse shape. Blessings..........