Questions about Meds

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Blubryprncss
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 3/22/2009 1:11 PM (GMT -7)   
Hello Everyone!
 
I have a few questions regarding medications. I recently had a bout of bronchitis and my primary physician put me on prednisone 10 mg for 9 days. This is the first time I have ever been on Prednisone and let me tell you I haven't felt that good in years. I asked my primary if there was a possiblity that I could be put on it long term. He advised me that I would have to see my rheumatologist for that. So I went to see my rheumatologist.
 
I mentioned to the rheumatologist about the bronchitis and the Prednisone and how good I felt on the medicine. I asked him if he would consider putting me on the Prednisone for an extended period of time. He then told me that he was a conservative type of physician and that he wanted to try me on a different medication along with my Plaquenil. He said he wanted to put me on Quinacine 100mg once a day. He told me that this medicine used to be used for MCTD a long time ago and that currently it is not covered by insurance and that he only knows of one pharmacy (that is 45 minutes away) that carries it.
 
My questions to all of you are: Do any of you know if there are serious long term side effects from prednisone and if so what are they? Does the prednisone make you feel that much better? Has anyone ever heard of Quinacine or tried it? If so has it worked for you and what are the side effects you have encountered?
 
I really don't know much about either medications and would really like to get more information.
 
Thanks so much for your help.
 
 
diagnosed rheumatiod arthritis, raynauds, MCTD 2002, lupus 2007
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/22/2009 2:05 PM (GMT -7)   
Hi Blubryprncss:

Yes, prednisone has side effects. Depending on the dosage and how long you take them and how your body reacts to them will affect you.

I've been on prednisone for almost 9 years now and sometimes at very high doses. I've had the following effects:

Moonface
Hump on my Back
Thinning of bones I've got osteoporsis my bones are like a 90 yr old
High blood sugars
Thinning of my hair
Deep purple stretch marks
Round stomach and skinny arms and legs
Retain water through out my body
Weight Gain
Sleeplessness
Mood Swings
Cataracts which will stop growing when I stop my pred, which will be never
Lowered WBC
Easy bruising
Lowered Immune System

I'm sure I've forgotten some things in addition to my list. Pred is a wonder drug and it can make us feel so much better but it can have very serious side effects. It can also cause High Blood Pressure in some ppl. I know there will be folks that will say they don't gain weight, you may or may not gain weight. I've been a member here for a long time and more often than not ppl gain weight taking the pred. It causes us to feel hungry all the time and unless your very careful with your diet I've known some ppl have put on as much at 75 lbs when taking the pred. I've put on 50lb over the past 9 years. I'm unable to exercise I'm on oxygen 24/7 and my O2 stats drop to dangerous levels when I try to walk or exercise. So I do exercises from the side of my bed and I walk as much as I possible can. I try to watch my weight and I do the best that I can.

I know the plaq is the medication with the least amount of side effects and the second medication you talked about I don't know much about. I guess you will need to do some research as to it's side effects compared to pred. If I were in your position I'd make a list of pro's and con's for my symptoms and how the prednisone would react to me. I'd discuss it seriously with my doctor if I was willing to take the prednisone.

I've only listed the side effects I've had. I have taken doses as high as 150mg per day for 10 days and as low as 10 mg per day. I average right now 20mg a day. It makes a huge difference in my quality of life. That being said tho I'm totally embarrassed of my body, I won't allow my hubby of 24 yrs see me naked anymore. The stretch marks are purple and look terrible, my moon face is so big my eyes nearly close when I smile these days. I'm on medication for my blood sugars and I have to be very very careful with falls as my bones will break very easily. I'm covered in bruises and I have a lovely hump on my back. Oh and the weight gain, did I mention that? Anyway, I have to take the pred as my heart and lungs are seriously affected by my lupus. My joint pain is totally unbearable. Between the lupus and the RA my joints are killing me when I move.

Not everyone ends up like me and I'm sure there will be others along to tell you the side effects they've had and heck maybe someone will be along that's take the Quinacine. I'm neither telling yes or no to take the pred I'm just letting you know the potential side effects that may happen to you if you take pred at a high dose for an extended period of time. It's not fair that we've been dealt this hand that we have with our diseases but we have to keep on going and do the best we possibly can. I hope that you can get some relief soon and I know others will be along to give their experience with the pred.

I wish you the best and if I can answer any other questions please don't hesitate to ask.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Post Edited (Barbara Lee) : 3/22/2009 3:32:30 PM (GMT-6)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/22/2009 2:26 PM (GMT -7)   
Hi Blu!
 
OH yes, prednisone is a wonderful, magic drug! I feel so much better when I'm on it.  Like Barb mentioned, there are lots of ugly side effects to it, but when it comes to feeling like crap, or feeling well enough to have a life, we take those side effects. Most of us do anyway!
 
I've been on prednisone for almost 9 years now. I started out at a high dose to get the inflammation treated, then I tapered to a maintence dose which I've been on for a long time.  I'm on 7mg now.
 
I don't know enough about Quinacine to tell you anything about it.  But there might be some members who will chime in. Prednisone will likely help with the RA pain you have too.
 
Welcome to the forum!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/22/2009 6:40 PM (GMT -7)   
My rheumy told me up front that long term Pred use was not an option for me, I guess because of all the side effects Barb told you about. I am on other meds that help my lupus symptoms. I am on Imuran to help my GI symptoms, Plaq for joint pain and fatigue, Piroxicam for joint pain, Methotrexate for joint pain, flexeril to help me sleep and ease morning stiffness & folic acid for mouth sores.

Maybe there are other options for you? I hope your doctor comes up with something to ease your pain and help your symptoms. Take care and keep us posted on how you are doing.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/22/2009 6:41 PM (GMT -7)   
Hey Blubryprncss! Prednisone is a wonderful but horrible drug for most people! There is lots of side effects Like Barb and Ginny mentioned. Some of them will go away if you are able to stop taking it or have the dose at a low dose. I have been on it for about a year now. Before Jan I was taking 5-20 mg, depending on flares. Startin Jan I was on 80 mg and thats when I started having the big side effects. The big ones for me the moon face, very close to how barb mentioned, buffalo hump, horrible thick purple stretch marks everywhere, and gained a ton of weight in 3 months, (a lot of the weight is water weight but it still adds up to me) In December I weighed 152 and now I weigh 221! I am starting to loose some wieght as the dose of pred comes down. So the lower the dose is better. I hope you can get some relief without having to stay on Prednisone long term. Let us know how things work out for you!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/22/2009 7:19 PM (GMT -7)   
I haven't been on here much since I been going through problems with my 20 year old daughter. To your question I've been on quincrine over a year now I have no problems with it at all, my doc. said you skin can turn yellow, but if your going to have any childern don't take it since it does cause sterlization. Myself I don't have to worried about that. actually I being doing really well on it. I will tell you my insurance does cover I pay 28.00 for 3 month supply. It is very hard to get where I live, one time I ran out and the hosiptal didn't have it either, they told me to order from calf. where they make it so I called they wanted 238.00 and they had to mail it to me which would have cost me more so I decided to stick it out until u.penn hosiptal called later that week and said they had it in. It is a compound med. so it is verry difficult to get. Only that one time I had trouble getting it and they have it every time I go now. My flares now are not as often and my blood work is good. They ask me to go into a study and said yes not for quincrine but for lupus. Good luck and hope it turns out well for you. I wish everyone well. Though and payers go out to each and everyone of you.
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 3/23/2009 6:42 AM (GMT -7)   
Hello :)

Your are very fortunate to have a doctor who knows about the Plaquenil /Quinacrine mix. This combination was very well known for lupus and similar diseases,not just MCTD but when Quinacrine was replaced by Plaquenil on the market for malaria prophylaxis the manufacturers stopped making Quinacrine up into pills. That's why it has to be obtained from a compounding pharmacy or a hospital pharmacy who will purify the chemical for human consumption and make pills or gel capsules. I used to get mine from Panorama compounding Pharmacy in La Jolla CA.

The combination can be very effective indeed for getting the lupus under control. The Plaquenil is sometimes replace by its stronger cousin Aralen for even greater effect. The two drugs work together each enhancing the effects of the other to increase the many benefits of anti malarials. Quinacrine is known to be particularly energising and it does not affect the eyes The yellowing effect is varies very much from person to person. I have been on 100mgs a day for over 13 years and my skin is not at all yellow. If anything it would look like a very slight natural tan but you have to look really closely and know what you are looking for Using this combination can mean getting off steroids and avoiding use of the disease modifying drugs like Methotrexate or Imuran.

I am sorry to contradict anybody but there is no fear whatsoever of becoming sterile with Quinacrine. It has been used in some third world countries for sterilisation but it is not taken orally ! It is inserted into another female body orifice for sterilisation purposes.
Of course if you plan to become pregnant you need to consult a specialist in advance and follow their recommendations about what medicines to use. After all, the anti malarials have decades of use for malaria as well as their use for lupus and other CTD's so their effects on pregnancy would be very well known

Dr Wallace discusses all the lupus drugs in pregnancy. There are no risk warnings in relation to the anti malarials causing any problems to the fetus He knows as much as anybody about Quinacrine use and I feel sure he would have said if there was any doubt about it.

If you google ( Dr Wallace Quinacrine therapy ) you will find his paper about combined anti malarial therapy on line. Here is a link

http://www.quinacrine.com/archive/wall89.pdf

There are a few rare side effects occasionally reported with Quinacrine use but you will be checked for any hidden ones like blood abnormalities and told to report any skin problems you notice You absolutely do not want to be on steroids for any longer than strictly necessary. They are a two edged sword to be used with great caution. You doctor is being careful as all good doctors are these days.

HTH
BB

Post Edited (BumbleBee1) : 3/23/2009 7:51:08 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/23/2009 9:46 AM (GMT -7)   
Blu,

Prednisone has helped bring my lupus almost into remission. However, I'll never take it again unless I'm dying, nor would I recommend anyone take it unless they absolutely have to. In addition to the side effects Barb mentioned, I've lost fillings and had two molars break in half. It' a miracle drug but only as a last resort drug. Your rheumy sounds like a good doctor. Good luck.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, cymbalta, tricor, acifex

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