Predisone

[Neta]

I am taking 50 mg Monocin MWF and am considering starting on Predisone for the pain.  In Dr Brown's book he stated adding Predisone, to help you through the herx, is a good idea.  Does anyone use Predisone just when they are in alot of pain and if so what is the dosage and how do you taper off safely?  Also is anyone taking the Mino twice a week rather than three times a week.  Seems this would be easier on my stomach.

Thanks

[linda]

Hi Neta,

Have you considered any other NSAIDs besides prednisone? It carries a ton of side effects and is difficult to wean off of. Some of the side effects include weight gain, high blood pressure, ulcers, slow wound healing, mood swings, cataracts, glaucoma, insulin resistance which leads to type 2 diabetes. In addition, it replaces your body's own production of a hormone called cortisol, which is necessary for life; one of the things it regulates is blood pressure. Cortisol is made in the adrenal glands, which sit on top of the kidneys. They will slowly stop producing cortisol over time as long as you are on prednisone. If taken for several years, they can atrophy and may never recover enough to produce enough cortisol to sustain life, at which point you may have to  remain on prednisone for life. It can be reversed, but it is very difficult and can take years, during which time you are still susceptible to all of the other side effects of prednisone as you're trying to wean off of it.

 Ask your doctor about these side effects, mine did not inform me of them when I started taking it, and it was only explained to me 5 yrs later by an endocrinologist after I had gained 70 lbs in a yr and a half. In the last 5 yrs I have been diagnosed as pre-diabetic, I've lost all the weight during a remission that lasted about 3 yrs where I  was able to reduce the pred to 5 mg every other day; and gained it all back over the last 2 yrs when the arthritis got worse again and I had to increase the dose again.

Don't get me wrong, NSAIDS carry side effects too. The OTC drugs are hard on your stomach and should be taken with food. The prescription meds, like Mobic (which may be cheaper in generic form than the OTC drugs), are designed to protect the stomach, but still need to be taken with food. You are correct in that Dr. Brown used prednisone short term, the rationale was that the antibiotics aren't effective if there is too much inflammation around the joints. Most people who are on AP start out with some kind of anti-inflammatory to reduce this inflammation so that the antibiotic can get to the joints. 

If I was armed with the information I have now, I would never have taken prednisone- however, there are some cases where the inflammation is so severe that the person has no choice. If faced with permanent joint damage, organ damage or blindness, I would definitely re-evaluate my decision, because the one thing that is constant about prednisone is that it works, and it works quickly.

I don't know your diagnosis or how severe your illness is, plus I'm not a doctor, so I can't advise you as to what you should do. I wanted to inform you of what you're getting into if you decide to take the prednisone, though. It's good that you're asking questions before you decide, and that you've read Scammell's book. As long as you continue to stay informed, you'll make the right decisions. Welcome to the RBF bboard!

linda

P.S. Make sure you're taking probiotics daily, if you already are, great! If not, just post any questions you have about them. There are some really smart people here who know more about AP, probiotics, herxes, etc, than me. You'll get plenty of help and support here.

[Patti D]

Hi Neta,

I have been on minocycline since December 2007. I was on prednisone until March 30th and can tell you I did not have any visible swelling until I was on prednisone. That drug was so horrible on my system. I became very moody, I could eat constantly and gained 22 pounds in 3 months. I am sure this extra weight will take me quite a while to lose not to mention how it sure is bad to have extra weight on these already stressed out joints:headbang: I also still took aleve with the prednisone. I was on low doseage 20 mg. tapered down to 5 mg. over 3 months. It did not take away all of the pain either so was it worth it. No, and I told the Dr. I would be hard pressed to ever take prednisone again because of the horrific side effects.

Patti D

[klogan]

I am taking 4 or 5 mg of prednisone 4 days a week to help me through a flare plus a bad reaction to minocycline and mino induced lupus. I know it's hard on your system, but in this small an amount, not too bad I hope. I was so reluctant to try this, I really got desperate before I gave it a try. I have been doing it for 1.5 months now, and have experienced no side effects. I lost 20 lbs while on it in the course of cleaning up my diet. I still get some ups and downs, but it has helped. I'm just about to stop taking it and see how I do.
Celebrex actually helps even more though.

I've also tried the topical pain relievers too (non-prescription). Here's a link to all the various types from an experienced user: http://www.associatedcontent.com/article/238121/a_review_of_topical_pain_relievers.html

Very occassionally, I take vicodin if the pain is so bad that I can't sleep, which hasn't happened for a month now. That is a drug to use with great caution, as I learned from other posters here who warned me about the addiction and stomach dangers.

I also use love, massage, whining, chiropractic, crying, loud expression of rage in a private place, meditation, excercise, and a mixture of resignation and hope.

[linda]

Just curious if you have heard of Lidoderm patches? They are prescription, but come in a box of 30 and are large enough to cut into smaller pieces if necessary, so they can be cheaper than the OTC patches. (Is it just me, or is this becoming true of many OTC meds-it seems like there are many generics now that cost less than the non-prescription meds). Anyway, the Lidoderm patches do a great job of numbing the area, and can be worn for 12 hours, you can wear up to 3 patches at a time. No side effects to speak of unless you are allergic to lidocaine. Keep them out of reach of pets and children, tho. They're great for neck/back pain if you sit at a desk all day, lower back pain if you do heavy lifting, or anywhere you have joint or muscle pain. Also good for road trips, they don't numb like the shots you get at the dentist; you still have control over the muscle, you just can't feel the pain. I don't know why more doctors don't rx them, the only doctor who even mentioned them to me was a D.O. who specialized in pain management. They seem to be a well-kept secret, the pessimist in me wonders if it's because they don't create a dependence and therefore won't generate as much money, but I hope that's not the reason. At any rate, there's no risk in trying them.

linda

[Neta]

Hi Linda, Thanks for the information, I will ask my Nurse Practitioner about the patches.  Since I gave her a copy of Scammell's book she is very open to working with me on the AP along with anything else that will help me.  The trouble is we are both treading new ground here and we are learning together. 

I had Lung Cancer in 1992 and was treated with aggressive chemo & radiation.  Several months after I finished treatment I began having unexplained (flares) joint pain and swelling which traveled from joint to joint never staying more than two or three days at a time.  When I would ask my DR about it he just chalked it up to a side effect from the cancer treatment.  In August of 2004 I went for my annual check-up and my hands were swollen so badly I could not use them.  They checked me for RA and the rheumatoid factor was 170.  I was immediately sent to a Rheumy who wanted to start me on Humira.  Needless to say I did not and will not go that route.

I started the Mino last August and have seen some improvement in joint swelling though the pain is still there.  My left knee stays inflamed and the pain is unbearable. I had a cortisone shot in the knee and it worked great-for two weeks then the pain seemed worse that before.  

I now have so many internal problems it seems I am fighting a losing battle.  I'm anemic, I stay dehydrated no matter how much water I drink, I have diverticulitis, I  am unable to eat much without suffering allot of stomach pain and no matter how much water I drink,I stay constipated.  Laxatives work sometimes and sometimes not. Oh and one more thing, I posted this before and no one seems to have an explanation.  My tongue is yellow and my NP said it is not fungus. 

I could go on and on but to sum it up I am not ready to throw in the towel yet. I'm guessing most of my health problems are a result of the cancer treatment and having RA. I just feel that if I could fix my digestive system I would feel much better and my body would have a fighting chance of getting rid of this RA.  
 
 
I appreciate the any and all advice, it does give me hope.

Neta

[Neta]

Thanks Patti for the reply.  I am becoming more and more convinced prednisone is not the answer.

Neta

[Maz]

[user=204]Neta[/user] wrote:

I had Lung Cancer in 1992 and was treated with aggressive chemo & radiation.  …. I was immediately sent to a Rheumy who wanted to start me on Humira.  Needless to say I did not and will not go that route.

I now have so many internal problems it seems I am fighting a losing battle.  I'm anemic, I stay dehydrated no matter how much water I drink, I have diverticulitis, I  am unable to eat much without suffering allot of stomach pain and no matter how much water I drink,I stay constipated.  Laxatives work sometimes and sometimes not. Oh and one more thing, I posted this before and no one seems to have an explanation.  My tongue is yellow and my NP said it is not fungus. 

Hi Neta….wow…I'm sort of speechless that the rheumy you were sent to wanted to put you on a powerful immunosuppressive right on the heels of having lung cancer and already having a depressed immune system from the chemo and radiation! Thank goodness you listened to your gut…speaking of which…

…what medications have you been prescribed for your diverticulitis? Just wondering if you've ever been prescribed Flagyl. Seems that Dr S, an AP doc in TN, uses Flagyl in his protocol and treated his own RA, bringing it into remission, with this in combo with mino and nystatin. Diverticulitis is inflammation of the diverticulum, caused by protozoa or anerobic bacteria (another great reason not to go on anything immunosuppressive…only “lay speculation” on my part, but your hunch that your cancer treatments may well have been why the gut bacteria got the upper hand and triggered your RA could well be on target).

Are you doing anything to heal your gut? A Friend has provided tons of great information on supporting and healing the gut, as well as detoxing, if you have some time to wade back through her past posts on the BB.

Great advice from Linda to stick with anti-inflammatories and the topical kind would be ideal for bypassing the gut, too. 😀 

Peace, Maz

[Neta]

Hi Maz, Thanks for the reply.   I was not advised there was treatment for diverticulitis, I will ask my NP about Flagyl.  I would greatly appreciate any information on how to heal my gut.  I will look through past post on this.

Neta

 

[superperroRA]

About constipation, I find Metamucil works really, really well for me. I take 2 tablespoons, twice daily. I highly recommend it.

[Author]

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