Had my 2nd visit with RD today and was told this is RA. He prescribed MTX (12 mg once a week) and 14 days of prednisone. He mentioned Enbrel, Humira, and Remicade - - but didn't want me on those because of my past history of breast cancer. He also prescribed folic acid and that purple pill (I forget the name of that one at the moment).
For the past two weeks, I've been on Naproxen and it has helped a little. Main pain is in my hands and wrists, having trouble driving, opening doors, etc. etc.
I am having second thoughts about MTX. I hate all these potential side effects. I was on it before during breast cancer treatments. I don't like having to give up having a drink at a restaurant, a drink after work on the patio, staying out of the sun, hair loss or thinning hair, etc. etc.
I'm new to this so am wondering if anyone can give me their opinion about anything else I could make take instead of MTX. My mother got RA at age 36 and had it for 40 years and eventually became very crippled, couldn't work, couldn't drive, used a cane and then a wheelchair. She took prednisone, cortisone shots, and a couple of gold shots.
Although I have long suspected I had RA, I guess the reality of it hit me today when he wrote me those 4 prescriptions. So, should I go with the MTX or is there another option I need to consider?
Thanks
Oh, that's such a personal question. I only took Mtx for one month before my liver thing so I don't know. I'm sure the prescription you have is a lot lower than what you took for breast cancer so it won't affect you as hard. I personally wish I could attack this RA with something stronger. I'm taking a lighter med because of my liver, otherwise, I would just do it. Good luck. Talk to your doctor and make a list of pros and cons. To me, the cons outweight the pros. You had a much stronger dose of the MTX when dealing with breast
Like becky said..Arava is another idea for meds or you can also inject the mtx and get lower side effects and usually better results with injection. The dose we take is much smaller than the chemo dose you got (glad to see you are recovered and in remission from the cancer). It is a very tough decision on what to do. You can have those couple of drinks on mtx once in awhile. Personally, I look at it like this....once the joint damage is done it is done and there is no turning back. If I can stop that or slow it down, I am going to and deal with the side effects. I have a family that I need to be here for as much as possible. I also enjoy creaking out of bed every morning. Please remember these are just my thoughts and opinions. Not something you have to do.
The folic acid will help with the thinning hair and potential hair loss. At least we aren't JRA kiddoes because they lose their hair pretty seriously on mtx. The little purple pill is prolly Prilosec to help protect your tummy.
And don't worry..what you are thinking and feeling about the meds is perfectly normal. We all went thru this and made our decisions about the meds. We do it every dang time they want to change our meds lol.
I am 35 and am on plaquenil (Hydrozychlor) This is considered the "Starting point drug". Lowest effects, ect...but better than the other effects from most drugs. Drugs are not always the answer to this disease. Find an alternative doctor or complimentary doctor who will change your diet, add supplements.
Dear Flamingo, I'd try to relax and go with wht your RD is doing for you, if you like him/her, that is. It sounds like you must be in some pain if you are taking Prdnisone (that will stop the pain!,reduce swelling and you will feel good, but be sure to read all the posts about 'getting off of it' , that's a bear.) 14 days will give you relief, and let yu be thinking about the mtx. Like everyone else has said it is way small amount of what you had before....I don't know about drinking alcohol now and then, but it sounds like some wouldn't hurt?!
I'm feeling your pain about your mother, we all know so much more now and have better treatments for this nasty disease. I'm so sorry she has suffered so much and you have watched her in pain and all.
I think you will have some hair 'loss' , but not in clumps or anything, 'it will grow back', my doctor says , as he is balding. does anyone else know the time for mtx to 'work' is it 4 months? That seems so long?
I'm glad you are getting help, Sarah
Hey Flamingo!
You might look into antibiotic therapy (AP). There have been some studies that say Minocin can stop colon cancer in its tracks. I kept a copy of that article but, unfortunately, I'm in the middle of a big move so could not lay my hands on it if my life depended on it. While I haven't seen anything about it and BC - at least it addresses some form of cancer.
Places to learn about AP are www.roadback.org or get the book "The New Arthritis Breakthrough" by Henry Scammell available at Amazon or Borders.
Pip
Just a quick cautionary note about antibiotics and breast cancer...studies have shown increased risk, though they readily admit they don't know why and the link may be due to underlying illness that led to antibiotic use. Here's the link.
http://www.cnn.com/2004/HEALTH/02/17/antibiotics.cancer/
Alan
Alan -
I found this on a lawsuit website -
Researchers involved in the study warn that the data does not conclusively link antibiotics to causing breast cancer-only that an association is present. Women may have been on antibiotics to treat a condition that is an underlying cause of breast cancer.
As far as I could tell on a quick search - that was the only study that ever linked ABX with BC. A lot of more recent research is showing that Minocin will stop some cancers in its tracks. Again, those of us that suspect we have an underlying infection of some kind hiding in our white blood cells want to make sure we get no other AI diseases. Has is ever occured to anybody that maybe our increased risk for lymphoma is not necessarily the traditional meds - but the underlying untreated infection?
http://www.anapsid.org/cnd/diffdx/bacterialink.html shows the viruses and bacterial links to various diseases.
http://www.healthday.com/view.cfm?id=535213
My connection at the hotel is really rotten - I tried a quick search of my files and couldn't find the colon cancer 'stop in your tracks' article I had. I loved it because we have a family history of it and I thought that made Mino a bonus for me.
I agree - she has to weigh her options herself - but why would it stop neurological diseases and colon cancer and not BC?
Pip
I was on arava before and did well with the liver. I got off it due to medication toxicity (not arava but other drugs) had to clean system.
im on mtx now and body hates it, might try arava again.
I had a nice long talk with my doc while I was in the hospital. He would come by and see me on his lunch break from the clinic (it is part of the hospital lol) and he would just plop down in a chair in my room and talk with me so I took advantage of that by asking a million questions. One of them was why. Why do I have RA this bad and some people don't. Why do I flare bad and some people hardly flare at all. This is the answer he gave me: They (researchers, docs, etc.) now are thinking that the development of RA coincides with a traumatic or highly stressful incident that we experience in life. Stress highly impacts our immune systems and tends to send them a little wonky. On top of that stressful or tramutic event, we get a bug (usually an infection not a virus) that our immune systems somehow sends to our joints. We can't fight it off so then viola! RA! So the infection theory and the theory of stress affecting us (throwing us into flares) is not that totally off base as I found out. I asked about ABX therapy and why more rheumy's do not recommend it more. He said that ABX therapy proves to be more effective when you catch the RA very early and used in combo with the other usual meds. As we can tell from the posts here...we just don't always catch RA in the early stages. Docs mess around with this test and that test and then scratch their heads for a bit and then call it RA for us. We tend to ignore the early stages and put it off to something else. Because who in the heck would want RA!!!! This would also explain why it may take awhile to see results with abx therapy. The infection got into our joints! Our immune systems are wonked out! Takes time to get over and fight infections like that especially with a wonky immune system to begin with! Most people choose to do ABX therapy alone and that is why a lot of rheumy's will not do it. He said in my case it wouldn't hurt to try it (I can't I'm highly allergic to sulfa based abx's which are used in abx therapy) but since I'm so far advanced and have had it so long it would be of little help to me. Even using it in combo with other traditional meds the docs use. From my perspective on trying it...I just can't afford to add any more meds to my already large regiment of them for such a slim chance. I know there is a way to possibly overcome the sulfa drug allergy. Pip and I have talked at length about that too. Please keep in mind that this is my personal decision and anyone thinking of abx therapy should weigh the pro's and con's of it for their own individual situations.
It doesn't hurt to visit www.roadback.org for more information or to talk with the people here that do the abx therapy. Pip is really really a nice person and I'm sure would answer any questions that you have about it. She does it for me all the time. Even if you decide that abx therapy is not for you....you would be educated and able to help someone else thinking about it.
OK...for the men here. You might want to skip this part of this post because I am going to ask our Pip about a female type question that grosses guys out all the time lol. Sorry guys but inquiring minds need to know lol. Pippie dahlin'...we all know that antibiotics can cause yeast infections in women. URG! Does that happen often with abx therapy or do the women just eat a ton of yogurt to keep everything in balance?
Funny how women will not usually share their age with anyone. Then we get into this situation and just really don't care about it lol. Grandma! There were two multiple posts on the RB in the last year - one was a woman named Delores (I think) who had RA 23 years and it worked within a month for her (NOT USUAL!) Also a guy who had RA 25 years when he found RA and it worked within 6 months for him. Peoples bodies are all different so it works different for everybody! Minocin in not a sulfa drug - I can take it! You need the sulfa drugs if you want to do the advanced protocols like the Marshall Protocol or the CPNhelp.org protocol but you can just do AP if you want - the advanced protocols are for people like me wanting to go for the 'cure'! More later - have to find an apartment today of hubby will strangle me. Pip
I would want to do the advanced therapy. After Danielle came up with the JRA I have been switching my thinking a lot lately to grab the bull by the horns and no messing around!! That is so great that the abx therapy worked for those long time sufferers of ra!!! That is awesome!!! That does my heart good to see that! Find an apartment!! We can't have you strangled now can we??? Gramma - many people have had great success with the standard AP treatment of non-sulfa antibiotics such as minocycline or doxycycline. The "advanced" protocol, while promising, is much less tried and true. It was originally devised to treat the rare disease of sarcoidosis. Those brave souls now using it for RA are really pioneers. You would really have very little to lose by starting on standard AP, with or without pred, mtx or anything else you may be taking. Brand name mino is expensive, but I don't believe the generic is. I take doxy, my co-pay is for a 3 month supply. Besides being inexpensive, it really is quite benign - remember, dermatologists all have legions of teeny-boppers on it for extended periods of time. If you go to www.roadback.org or www.rheumaticsupport.net, you can read testimonials and stories from those whose RA, even severe & longstanding, was turned around by AP. As for the yeasties, it is imperative while on AP to take a good probiotic daily, and lots of it. That will usually take care of the problem. Some however need to take an antifungal such as Nizoral or Diflucan, others use natural things like oil of oregano or Clarkia. Good luck to you, whatever you decide to do! Pat Gramma! LOL - so true - I haven't even told my daughter my age! Joking around I told her I was 99 and then got the most beautiful "Happy 99th Birthday, Mamma" card. I will treasure it always. Pat's right - AP alone is an easy 'fix' - in that you can live your life painfree even if you have to take antibiotics for the rest of your life. The best value for AP is that you learn about herxing and 'managing your herx' - meaning how your dose effects you and your body and how many of the beasties can you kill at a time. Too much Mino in the beginning can knock a person on their backsides. My hubby didn't want me to start an advanced protocol until I was in remission - but now that I know how to manage a herx - I feel confident I can handle it - does that make sense? As for the yeast thing - imagine my surprise to find out that is one of my underlying problems. There were a ton of posts about how that can be a dietary concern - but silly me - I thought it couldn't possibly mean me. I came to that decision since I've been uprooted and realized a 'traveling' non-healthy diet really is influencing how I feel - Not bad. No pain. Just yucky. And the tell-tale women's sign. Sigh. So, as soon as we get settled I'm going to go on an anti-candida diet for a minimum of 6 months. Because I'm already on one diflucan an month and it's not cutting it. So.... If you ever try this...be prepared to take a ton of probiotics. I get mine in the refrigerater section at the health food store. I think of it this way - there are a ton of studies that say up to 70% of our AI system is in our guts - something in my system got loose under a ton of stress - so...I have to figure out a way to 'mop up after myself'. :-) Pip
I'm sticking with my meds for now. The AP treatment is something my husband and I have discussed before but he wants me sticking to my meds at this point in life. I really don't care what treatment people use especially if it works for them. It makes me happy and does my heart good when anyone gets better and feels better no matter what they are doing for treatment for this icky ra. The only thing I really care about in all of this is don't make me feel bad or guilty for whatever treatment it is I choose to do. This is a support forum. Not a do as I say forum. Even tho I don't do the AP treatment..I do believe there is a strong basis for it especially after what my family doc and my rheumy said to me. However, both said at this point stay on my meds and we will discuss AP therapy when I am better. At least they are leaving the option open for me. There are a lot of people that ask about AP therapy and I always point them to the roadback site. Or to Pip lol. Even those asking abut going the natural way I usually know someone doing that and can point them in that direction. Treattment of this fickle disease is an individual choice. But I do feel all aspects of treatment should be looked at and studied before making that huge decision on which treatment road someone is going to go down. Speaking of natural treatment and alternative medicine docs...Micheleb...how ya feeling hunny? Any better? The infusions working at all? Gramma, I've got a friend doing the RA thing by diet alone - and she's made almost a 100% recovery. Last I heard she's had one minor flare in a year! She has energy and 'get up and go' and is living life the way it should be. A lot of the herbs and vitamins in her 'arsenal' are natural antibiotics. Too cool. I so wish I could do the same but I have a history of stomach problems and had to go the western med route - until I can get off the anti-inflamms. I think we should all experiment in what makes us feel better and what we can do to help our bodies fight back. My biggest concern is people not being offered all the options. Alternative docs don't consider the traditional meds - regular rheumy's don't consider AP - the list is endless. If we want to live life to the fullest we have to do our own research and make our own decisions. Pip
minocin is having an effect even though I'm on immunesuppressants. The
way I figure it, I still have some functional immunity or I would be getting
every cold and virus going around, and I'm not. Because I'm on mtx I was
able to start at a higher dose of minocin. Those on nothing else have to
start at a very low dose of they will probably herx like crazy (ouch!). I've
been on ABX for about two months. Last month was a bad month for
reaching new pain levels and new joint and muscle involvement. Last
week I had two completely pain free days in a row. That has never
happened since this RA reared it's ugly head in me! So while I can't say for
sure, as I'm on other meds and there are always other variables, I think
the ABX is working as it's following the predictable pattern of response.
So I believe at the moment, that while it may not be ideal, ABX can be
successfully used in conjunction with conventional meds.
Yeast can be a problem and I did get one killer yeast infection my 3rd
week in. As it was immediately after drinking a glass of red wine and
eating two slices of cake and a cookie it wasn't hard for me to connect the
dots. I now limit my sugar intake and take a variety of very high quality of
probiotics. According to the simple home candida test my yeast levels
have been acceptably under control since then. Probiotic yogurt is good
but not enough, as there are a large variety of helpful and needed flora
and yoghurt only has some of them. My current favourite probiotic is
Florastor, which doesn't need to be refrigerated. The only problem is it
costs about for a 25 day supply.
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