My Journey - Rheumatoid Hands

enthusiast

New Member
Last week, I went to a bone doctor because I have some problems with my hands. He got me an appointment within a few days at a rheumatologist. Now, I'm on Prednisone (a steroid) for the next month and Methotrexate and Folic Acid long term. The Folic Acid is for possible side effects (mouth sores) of the Methotrexate.

I honestly don't like taking prescription drugs, and I'm not thrilled at all with taking the Prednisone, but it stops the harmful progression of the arthritis quickly and gives the Methotrexate time to kick in.

I've started learning all I can about rheumatoid arthritis and natural and alternative ways to help and possibly cure it. I have another thread about a friend having RA, but since I was diagnosed with it only yesterday and have since learned that a large number of people are afflicted with it, I want to share my progress. Hopefully, I'll be able to get off the prescription drugs to natural ones.
 

Healthy4us

New Member
Enthusiast, thank you for sharing your journey and experiences! My thoughts and well wishes are with you! You will be helping so many people, you have no idea. Since you are on medication, it will be extra important to watch if you can have an interaction of medications vs. which ever herbal or supplements you might want to try. Have you given any thought to Acai Berry?
 

enthusiast

New Member
I opened some caps without help or the aid of pliers yesterday! Wow! That was exciting!

Healthy4us, there is a medicine that I can't take since I'm taking the methotrexate. I forget what it is, but it written down somewhere. I think I'm okay with herbs and supplements, though. I talked to the doctor a little about them and she said they would be okay. I'm switching from "natural" vitamins to whole foods vitamins at the advice of a naturopath, whom I plan to go back to once the RA is controlled. I still want to go the natural route with this, but unfortunately, prescription meds work faster and I waited longer than I should have to go to the doctor so a diagnosis could be made and treatment could be started.

Today, I have to go to the hospital to get my hands x-rayed. The doc wants a chest x-ray, too, but I just had one last week at the same hospital for the bone doc. I hope they can use that one. I sure do wish I'd had the surgery on my left elbow when a broke it almost two years ago. Maybe if I had, I wouldn't be in such a mess right now.
 

StingingNettle

New Member
I'm sorry to hear this bad news for you. It sounds like you have a great attitude though, and that makes a huge difference.

Your approach sounds like how I handle things. I use medications until I can figure out a more natural approach. And sometimes I think keeping something under control until you can get a holistic treatment plan in place is far better then letting it get worse while you search for alternatives. Not with every disease, but for a degenerative disease like RA, that is the approach I would take.

Thanks for sharing.
 

wanderingherb

Moderator
Enthusiast. i have to take methotrexate. Hopefully they start you out slowly. Unfortunately, i had to do all the research myself to find out that Folic acid was suggested. Its not just the side effects of mouth sores, but also the Methotrexate depletes our system of folic Acid. I was having a hard time with the folic acid for awhile. So I used Folinic Acid. So if your stomache starts getting upset or your intestines...try that for awhile.

Methotrexate is chemo. Theoretically what it is supposed to do is stop and re-trigger the auto-immune system. This lowering also stop the immune system from attacking your joints and...eyes or other organs in the body.

Its hard on the liver. I use a liver tonic. sometimes dandelion sometimes Milk Thistle...our liver is the only organ in our body that can repair. SO make sure you have those blood tests every three months.

I use valerian root because the prednisone hypes me up and seriously affects my mood. Its like I'm bonkers. so the chamomile/lavender, passion flower and valerian tincture in that tea helps ease the jumpiness and the just plain poopy attitude sometimes.

DO NOT use echinacea. BIG no no with auto-immune system disorders. Try astragulus instead.

Moducare is excellent alternative to prednisone. But you have to give it time to build up in your system. So check that out too.

There have been studies done in Germany regarding the enzyme in Venus Fly Trap. They have found it to actually put a person into remission. in the us the only legal venus fly trap is via a tincture that is grown in green house. Herbapharm product. i have not used it as I am not convinced that this is the solution considering they are using a form of the enzyme not the plant itself. I check it out across everywhere with herbalist and no one is really using it nor in relationship to RA.

I am trying to learn more about that.

I have learned to make a nice salve of devils club, meadowsweet, white willow, yarrow...if you can, put some black pepper E.O., Lavender or Ravensara. If you are not sensitive. The salve help eases the stiffness and really helps with overall pain. My pain became so intense it was incredible. It can really move with rapid pace.

what did your RF come out at?

Since the methotrexate lowers blood cells, you may bruise very easy. i keep arnica oil on hand. As soon as i bump or have an accident, I use it as soon as possible and many times a day. This will help relieve swelling and bruising.

Also, you may bleed heavily. I use yarrow for this. Yarrow not only has many qualities for injuries it is also a styptic.

Tai Chi. It has been incredible. I do it in the morning. Or in the evening. It helps move all your joints in a very non-invasive manner. whereas yoga, the positions were kept at period of time I would lose circulation and thus pain would start. I have had great outcome with tai chi on the other hand!

Breaking bones is more osteo not RA. RA is auto-immune and often triggered by stress. In fact most of the time a flair is related to stress. Sometimes we are not even aware of what is causing the stress. It could be environmental such as things we have no control over going on around us. So keep an eye on that also.

Monthly. Good lord. I have always been regular. Like clockwork. About 3 months into the methotrexate I realized my period was like gone. Then I would have discharge for two weeks. Incredible nuisance. I had them take a hormone test to see if it was menopausal in relation due to they would not believe me that it was the methotrexate as they do use this to cause abortion in the day after type situations. My tests came back fine. I looked it up and it is the damn methotrexate.

So now I am also taking a tonic for my female reproduction system. Dong quai, burdock, black cohosh, Motherwart (for stress), chaste tree and licorice.

I am doing Vitamin B12 shots twice monthly. It is AMAZING how much of a response I have had to this alone. Even though the blood tests come back my body is not short of it, we did it anyway. Boom. Within a few weeks I was feeling great. Did one shot a month and then I could actually feel it wear off in two weeks. so we increased it. It truly is amazing how many folks with RA have responded to this vitamin.

You'll want to start 5000 IU of Vitamin D3 a day. ALso see if you can get you hands on a good overall coverage of vitamin B's. I cannot express the b's enough.

I was using a zyflamend softgel, but I guess they took it off the market. Bummer because it worked great. The ingredients were Rosemary, tumeric, Ginger, holy basil, Green tea, hu zhang, Chinese goldenthread, and Baikal skullcap root.

On the day you take your methotrexate avoid any type of NSAID. Use tylenol. It reacts with the methotrexate and really makes you not feel good. Or so it did me. So watch that too. Also, I did not get my sideeffects until three days after dose. Not the day or day after. This is not uncommon. The tiredness, and the icky feeling. They laughed and said no way, but I looked it up on a database of side effects patients were reporting and doctors are not recognizing and in fact, I am not the only one. It is far more common than they accept.

Also, it will build in your system and sneak attack you. So to avoid this, the dose I take I take half the dose and drink 24 fl ounces of gateraid/water combo. half and half. then 8 hours later I take the other half of the dose. I do the same thing. This helps a lot.

If I think of more I'll let you know.
 

enthusiast

New Member
I knew there were very good reasons I don't like or TRUST doctors and a lot of what you shared brought it all back. The doc didn't tell me half of what you did about the Methotrexate, which when I think about it is not surprising. Thank you for posting all the information about what herbs will help. I wonder if ditching the rheumatologist and the prescription drugs and going back to the naturopath would be a much better choice.
 

wanderingherb

Moderator
Well, in all honesty, I wouldn't. I would use the conjunction of both. You see what you have is serious. It will fuse your bones together. Now what they don't tell you is that yes, you can go into remission which is what I am working on. Once in remission, there is no reason you can't slowly back off what you take. Slowly and see how your body reacts. Does it come back or not.

Unfortunately, they never let you know when you are in remission. I have to force them to take an RF. They were more than happy to take it to find it, but after giving you all the bad stuff, they only test your liver count with a few other things. But not the RF. My RF went down. From 111 to 40 which is good. 20 is where I want to get it. BUT, they keep saying...well just because the RF lowers doesn't mean your RA is gone.

Duh. True, I mean chronic=always but it does mean the "flair" is gone. The flair is what causes the damage. I was reading a lot of RA individuals experiences and their Rhuemies got them off the drugs if they could. The one I went to...no. Maybe not yours either. But this is why you have number 2 docta. One you can trust.

The naturopath if a licensed MD or GP can prescribe the vitamin B12. They really don't hurt, its just that creepy long intimidating needle that really is freaky. SHe or He can also help you watch your cortisoid. Also the prednisone will decieve your body. If you are sick it will hide the conditions. Then you end up on your butt. It lowers your immune system substantially. I hate the stuff. My GP hates it too, but at this point, we have no choice.

So continue on, just do lots of research. NO, they never tell you about the meds. You have to find out on your own. Then when you bring it to their attention, they deny the drug has that effect. Whatever.

The enbrel they put me on. Once a week shot. Get this...I called the company and said, I have the right to actual informaion pertaining to this drug. Yes. I said, I want to know exactly the stats on developing lymphatic cancer and the groups. Come to find out, individuals with RA are at higher risk for developing lymphatic cancer from this drug.

OH REALLY, so why give it to me?????

I am going to talk to my doctor here about it. I think its another one of those experiment tings where the doctors get a kick back from the pharmaceutical company.

Enbrel is a TNF blocker. I'm on search right now for herbal TNF blockers. I mean why not? Rather take my chances with that and slowing the process of RA down rather than raise my risk for lymphatic cancer.

It just pisses me off.

More research I did I found that some believe it is actually like a fungal infection or viral infection. So some doctors have been treating it this way with excellent results.

The more I look the more pissed off I get though. And then I have this person saying you can no longer work doing that, and another saying you can't work at all due to the "psychological" risk of getting stressed and then I have disability telling me that its all a crock of bull and I have to work.

So...Whats' a gal to do?
 

enthusiast

New Member
More research I did I found that some believe it is actually like a fungal infection or viral infection. So some doctors have been treating it this way with excellent results.
Okay, with everything else you have said, the docs don't honesty know what causes RA. I think you said that in one post. They just put you on powerful drugs like Prednisone, Methotrexate, and Enbrel, which help the symptoms and may or may not do something for the RA. I could go on a long rant here, but it wouldn't be productive.

IF RA is caused by a virus or bacteria, it seems to me that taking a drug that suppresses the immune system is the LAST thing you would want to do. Isn't that like asking to get some kind of serious illness, like pneumonia, and die because your immune system is compromised?

The more I learn, the more I'm being convinced that I'd much rather take my chances with RA and finding alternative treatments than I would with the drugs doctors have put me on.
 

StingingNettle

New Member
Isn't rheumatoid arthritis sometimes precipitated by the rubella vaccine? I think that contracting rubella naturally can cause some arthritis symptoms. If I recall, it is women of childbearing age that are most likely to develop arthritis following the vaccine.
 

wanderingherb

Moderator
Sigh...no, RA has nothing to do with Rubella.
This is a definition of Rubella:
Rubella - PubMed Health

Google pretty much clears that definition up rather quickly.

A few tylenol and time will NOT cure RA. Chemo is very serious and they don't use it for chckenpox or rubella. RA can show up as Juvenile, or older.
 

wanderingherb

Moderator
The more I learn, the more I'm being convinced that I'd much rather take my chances with RA and finding alternative treatments than I would with the drugs doctors have put me on.
This is exactly what my anger was also. No, they do not really know what causes it. It is triggered. They believe with the studies done, and there haven't been many as this is an increasing and fairly "new" area, some of us are more genetically predisposed to Autoimmune disorders than others.

But I find it interesting that individuals have been cleared up via teating like an infection. Now the studies on that aren't many, so what if the diagnosis wasn't correct to begin with?

Yep, very frustrating. But when you can't move, you in pain and no matter what you do makes it worse, what can you do but take things to make it "settle" so you have quality life. They presume.

Some Rhuemy's will automatically check to see if your "Flair" is under control. If it is, then they will cut back SLOWLY on your meds and see what happens, then you start up again if you have another flair.

Since they aren't sure what triggers it, some Rhuemy's keep you on the meds so you don't flair so you don't cause severe damage to your joints and...lose more muscle. For every pound of muscle lost it take up to two months to regain it back. Hnce another stress on the body.

Wicked. It just is ooooops I cussed being.

Its a choice that each person has to make on their own.

Unfortunately, the damage is real. The drugs to decrease it. For some folks even remission.

You have to research and decide. Iknow many who take the meds for awhile, but they are so darned (ooops cussed again) expensive, they go back off again. I know some who have it and mountain climb with no problem. I know some who are in the wheelchair by one year after dx.

So you have to really decide for yourself what is the best course of action for you to take. No one can tell you any different. It is YOUR body.

However, I will tell you, if indeed it is RA and it decides to go aggressive, you will be in a wheelchair if you don't take cae of it. The pain is indescribable and constant. In every part of your body. So your hands may and probably will get worse and then your knees then your hips especially your feet...

I have felt the pain, and really, there is no describing it, then it take a full year or more just to get it under control enough pain is tolerable. Meanwhile, all that time irreversible damage has taken place.

So I decided to be proactive. I will take the meds until I find a combo of naturals that work, then back off my meds, then see what happens. After all it is my body, I have the right. But I do not want to go back to that pain again.

Guess I better stop ranting with you cause I feel the same way as you and it appears I am just cussing rather than discussing! LOL :)
 

enthusiast

New Member
Isn't rheumatoid arthritis sometimes precipitated by the rubella vaccine?
Sigh...no, RA has nothing to do with Rubella.
Actually, after doing some checking, it appears you both are probably right. Wanderingherb, I think you are definitely right that Rubella itself has nothing to do with RA; however, it's the Rubella vaccine that StingingNeedle referred to.

I'd read some things about other vaccines, mostly the H1N1 vaccine, so I decided to do a search. There is evidence that the vaccine for Rubella could have a connection to RA, mostly in children I think, but I didn't read the articles closely.

I didn't look up anything about contracting Rubella naturally causing arthritic symptoms. That seems like a stretch to me. I wonder how a vaccine for Rubella could bring about arthritic symptoms.
 

wanderingherb

Moderator
Rhuematiod like symptoms, is very very different than RA. Not the same. Symptoms go away, Chronic does not.

Enthusiast, your dealing with "flares" your in a flare. Flares cause damage.
Decide what your priorities are. Get it under control to minimize damage and then go from there, or...find something else to do while flaring and face possible damage. Make a decision and then go from there.

RA is chronic. It will always be there. Flares, this is what you want to avoid. Its the Flares that cause the rapid damage.

This is where the Rhuemy comes in. They know exactly what blood tests to do to find out exactly what type of autoimmune disorder you have. They deal with many autoimmune disorder including diabetes.

Let's turn back to the positive. Being educated you need. But, must stay on positive during this.
Your doctor was smart enough to catch what was going on before putting you through two very expensive unnecessary carpal tunnel surgeries!

Okay, now you know what you have. You can make choices through what you've learned, and then make even more choices after that.

The DX doesn't mean we can't get better, it means its going to be there no matter what. Its the flares you want to be concerned with. To keep those under control. Unfortunately we all know that natural ways do no work as quickly as pharmaceuticals.

Here is a clip about Moducare. A friend of mine referred me to this because she is a naturopatic and has a very rare autoimmune disorder. Like us she had to make choices to get it under control. This is what she takes to assist stabilizing her system:
YouTube - ‪Care About Moducare‬‏

Its another thing to check out.
 

enthusiast

New Member
But I find it interesting that individuals have been cleared up via treating like an infection. Now the studies on that aren't many, so what if the diagnosis wasn't correct to begin with?
Good question. I find that interesting, too. It's something that I'm going to find all the information I can about. When my family doctor did blood tests a few months ago, there was no indication of arthritis. When I went to the nutritionist, he didn't appear to think it would be hard to treat this with diet, heat on the area 2 to 3 times a day and supplementation. The main thing, though, is to get the flare controlled and it's the prescription meds that can do that the fastest.

So, I've made one decision since my diagnosis. I'm going to stay on the prescription meds until I can find another course to take. Though I hate taking them, I believe they are helping to stop further damage. The fingers on my right hand are starting to straighten out and the swelling is easing at least a little in the left hand.

I also decided to start taking some herbs and supplements. I already take a whole foods multi. I'm also going to take garlic, fish oil, hyssop, and turmeric, or at least that's the plan. In the past, I haven't been good at taking anything consistently, so I'll have to work on that.

Since both of my parents had RA, I'm sure there's a genetic link to mine. My sister and one of my brothers have arthritis, too, but I'm not sure which kind. I've experienced pain with this, but I know it can get much worse, as can the damage. I want to avoid both as much as possible.

I haven't gone through such a range of emotions since my dad was diagnosed with cancer in 1998. I think I'm settled now, though, and ready to concentrate on finding some answers.
 

wanderingherb

Moderator
Unfortunately, prednisone only works to take the swelling down. It doesn't stop the progression situation. Hence the reason they gave you the other med.

The reason due to swelling is that your being attacked. Prednisone only takes the swelling down. Its a strong anti-inflammatory.

Glad your feeling better. They tested me for two years before my "flare" was so there it showed up. Its the RF they look at. However, even if it shows at normal levels, you can still have RA just may not be in full out Flare mode.

I know what you mean about the feelings. The emotions are dreadful. Some of it is actually part of the illness and some of it is from finding out about the illness and they just kinda leave you hanging to defend on your own to educate yourself on uh...what is this? What is going on with my body?

I rebelled against everyone the last week. I went commercial fishing. Did not get the job, but you know what, I was told I could NOT do it. Tired of the negativity. So I did it.

Did me some good doing exactly what they said I couldn't do! :)
 

enthusiast

New Member
I have to know how good of a catch you got! I wondered why you weren't posting.

I could go on a rant about the Prednisone and Methotrexate and the docs not telling me all I needed to know, but I won't.

they just kinda leave you hanging to defend on your own to educate yourself on uh...what is this? What is going on with my body?
Honestly, I have to disagree with you about the education part. I believe the reason they don't tell you how serious the side effects of the drugs can be and what they do is that they don't want you to know. As for educating yourself about the disease and what is going on with your body, I don't think they want you to do that, either. I think they want you to blindly let them treat you however they see fit.

Have you heard of the book "Eat Away Arthritis" by Lauri M. Aesoph, N.D.? I started reading it and then got busy with work. I think it has a lot of the answers that I'm seeking in it. Doing what it says is not going to be easy, though.

My outlook is much better since getting off the meds. Oh, I'm taking Moducare, which you talked about, and some other supplements. My right hand is unclawing slowly, but I still have a lot of swelling in the middle finger of my left hand. The other fingers are swollen, but the swelling doesn't seem to be as bad.

I'm glad you're back!
 

enthusiast

New Member
Just thought I'd stop in and post an update. Since I stopped taking the prescription drugs, the swelling returned to my right wrist and fingers of my left hand. There's been pain in my injured left elbow, too. Until yesterday, though, I was very lax in taking herbs and supplements. Pain in my hands and weakness in my arms were powerful motivators after a few days. I started taking the supplements that the nutritionist suggested and some herbs, Garlic and Turmeric for two, and there is less pain today.

I still have the issue of the bone that is not connected in my left elbow, so I'm going to start wearing an ace bandage to give it some support.

I believe I made the right decision when I quit taking the prescription drugs. Now, on to reading the books about diet and doing what they say. Anyone have any extra will power to give me?
 
Top