Methotrexate Journey

Sandi,

You can get the cell salts from Amazon. I think you may need to put in the individual name of each one to find it. Looks like they also have a set of all 12 cell salts for $99, which is a pretty good price. Vitacost and Lucky Vitamin both usually carry them for very good prices, also, if you ever order from them. Just be sure when ordering them that you're getting the 6X potency, and not a higher one, as I see that's a common mistake. Here in the US, I think that Hyland's is the only brand that makes them.

You could also check your local health food store. Most of them carry the cell salts, aka Scheussler's Tissue Salts, usually found in the homeopathic section, but they're generally displayed separately, labeled #1, #2 thru #12.
Here, I pay more for them when I buy them at the store, but then I don't have shipping costs, either.

Sandi, if you're having problems with your hair breaking and dry skin on your hands, I'd also suggest getting the #12 cell salt, called Silica. Silica helps with mineralization, and gets all the other minerals working in your body. Silica has affinity for the skin, hair , nails and connective tissue, and will help strengthen them. It can help with hair that's falling out. (Of course, you might find those symptoms will stop if you stop the Methotrexate).
Silica is the cell salt for nails that break easily; cracking nails, brittle nails, toenail problems with fungus, ingrown toenails, nails with white spots on them. Bunions.

Silica has a short energy expenditure range – Adults have 1 or 2 hours in the morning, then they are exhausted. Silica is a great energy manager; persons needing it delegate or manage their energy and time, because of their concerns about running out of energy. Acute exhaustion, use Silica to get the stamina back

Someone needing Silica may have an extreme Fear of shots or needles, or of getting their blood drawn.

Silica is also one of the very best remedies for bad effects from vaccinations. (It's not the only remedy to have that effect, but it is in the top 3, I'd say.) Major remedy for bad effects of vaccinations in newborns. Children after being vaccinated seem weaker,they get respiratory problems, colds and flu’s, they lose their “umph”. They tire easily, growth rates slow down.
Silica also helps dogs and cats from problems with vaccinations.(Sulphur and Thuja are other Rxs that may be needed)
.

Sandi, I hope you'll give some of these a try--they 're fairly simple and inexpensive.
And, remember, my offer still stands

April

Thank you. I think I am getting to the point of really considering it. I'll look into the things you suggested.

Hey my Meth Friend from Oz I'm so sorry you aren't doing well! It does sound like you have a good plan of action going though and I hope you do well!!

I saw that your TSH was 0.03 - that's considered hyperthyroid here. When I was diagnosed my TSH was so low it could not be read. 0.3-3.0 is the norm now suggested here - although my lab still has it at the old range of 0.5-5.0 - I don't let my MD tell me my numbers are fine because he thinks 5.0 is "fine", I make sure I get a print out and if need be I contact my endocrinologist.

Hang in there - thinking of you!!

Hey Melinda good to hear from you, I am thinking perhaps I need to see a endocrinologist and that's one of the reason I am looking for a new GP he is always reluctant to send me to a specialist. There is no way I could get him to send me to a hemotologist, flatly refused he didn't think ITP was serious enough to warrant that, so even with counts of 2k I have never seen a hemo.
But we all have to continue to fight the good fight and I will get all this under control, little bit sorry that I had my thyroid removed but at the time I was on 50mg of pred and would have let them cut of my arm if they told me it was going to make me better, hindsight a wonderful thing.
We will have to meet for coffee one day, lol

Just a quick catch up, I ended up having a bit of a rough week but all is good now. I called the rheumatologist on Tuesday and it turn's out that I was having a "flare" never happened before so I had three days on the dreaded Prednisone and all is good now. He explained this could happen ever now and then and might just need to take pred for a couple of days to settle things down ( I think this is better then increasing the Meth)

April,
Thank you for once again suggesting that I try your solution to the side effects of the meds, I did try it (my family thought it was a bit funny to watch me making it, all that shaking and swishing) but I have done it and I feel much better this week after Meth night, woke up this morning and had the headache and a little nausea so I had a little sip and it subsided. I know that some will say it is the placebo effect but I really don't care what the reason is it makes me feel better, so I will continue with this. It is now 2.00pm in the afternoon and I feel pretty good.

Sandi,
I hope you are going Ok

Have a great weekend everybody and thanks again for all your support.

Hi Milly,

I'm really glad to hear you decided to give it a try, and that you're feeling some better!
And, see-not only are you feeling better, but it's keeping your family entertained as well:cheer:
Remember, you can do the same thing with the Prednisone, too, if you're getting many side effects from it.
This method will help lessen the severity of the side effects.
Thanks for sharing,
April

Woohoo! I cannot tell you how many times we've used this method to get relief, Milly! And it works on my cats so I don't think it's placebo. Glad you find yourself more comfortable physically now.

patti

Thanks Patti for your good wishes, I am a pretty open minded person and have learn't so much since all this started.

I have learnt what it is like to be truly desperate to feel ok, not great but ok is good. I have learnt that if someone reaches out to try and help to give it a go, it's the least you can do and you never know it may just work. I will never knock anyone that has a different opinion as that is what makes this world so wonderful, the fact that we are all different.

I have taken a lot of advice from this discussion group and it has improved my life, I think it was Dee Dee once told me to go with how I feel if the dusting is not done the world will not stop turning, the message was to relax a little and not worry about the small stuff. I wish I had have been involved with all the people (friends) on here when I was in the depths of prednisone depression, I am sure it would have helped.

You are a wonderful group of people and although there is sometimes heated discussions we are all here for each other.

Anyway I will get off my soapbox as my brother (whom is 49 has called all his family to a lunch at a pretty fancy resort for lunch, we have a feeling it may be a surprise wedding) so a big day for me.

Hey Meth Head - didn't realize you were thyroid-less, or I forgot. Interesting you would have a hyperT test result. Hope you can get an endo!

It would be a kick to meet you for coffee some day!

How was your brother's lunch at the fancy resort?

Hey Milly - how are you doing these days?

I didn't take MTX the past two weekends because I had too much to do to feel crappy. I'll probably start again this weekend. I've noticed that my skin is getting really thin. I have bruises and petechiae all over my arms and I keep getting abrasions and I don't remember scraping my skin at all. I have what looks like a cigarette burn on my arm and I didn't do anything to it. My nails also got really thin and they all broke off. I've been really stuffy and have had a nasty cough since July. I'm trying to figure out if this drug is worth it. I actually do better with a higher dose of Prednisone. I know I can't keep doing that though, even though I have done it for years anyway.

I see the Rheumatologist next week, so I guess we'll discuss it then.

Gday Sandi,

I am actually going ok, all the same things as you though, thin skin, red marks like scrapes, petechiae, bruises and the cough all the time. I feel like I have a small dose of the flu and my hair is so dry but the Methotrexate still helps with the pain so it is not all in vain.

When I first started I was pain free not so anymore but I go back to the Rheumatologist next week also so we will see what happens.

Sorry to hear it's not working so good for you maybe you need to try something else. I have also noticed that it effects my mood sometimes, not as bad as prednisone but it does make me a bit down, so I haven't really decided if I like it or not, like the pain relief but not the side effects. I see that there is a new drug for lupus in the US (benlysta?)what is your thoughts on that?

My Rheumatologist keeps bringing up Benlysta, but I'm not too sure about that. It's still so new and the way I am with side effects, I'm afraid to try it. I think I'm out of options though. I've pretty much tried everything. I tried CellCept and couldn't tolerate that. Haven't tried Imuran but I think it's so similar to CellCept that I'd just have the same problems. I'd honestly like to try a low dose of Morphine, then maybe I can get off of Vicodin and lower the Prednisone to 5 mg's. It was a horrible pain week and I'm so tried of being cranky. I'm mean to everyone at work and at home and it's not fair to the people around me. I can't even stand myself. I just want off of this ride already. Sorry. I hate complaining.

Even you are allowed to complain and I understand, it's awful when you can see yourself being mean to people and as hard as you try it's just something that comes out and then you regret it, I seem to be doing a lot of saying sorry lately. My daughter even approached me the other day to ask if I thought I needed to get some help, hard conversation to have but I explained that constant pain makes people feel a bit down sometimes and I feel as though if I can get that under control life will be better.

I have actually tried morphine patches, one patch a week of slow release morphine they worked ok short term. I had them for about six weeks, I have a couple left over I would send them to you but I don't want to end up on Australia's Most Wanted for drug exportation LOL.

A friend of mine is on Imuran for chrones and she finds it ok, she does admit that it causes a bit of paranoia sometimes. Seems as though all medications have a down side but I suppose when you consider how powerful these meds are and what they are actually doing to our bodies you can't escape some side effects.

Anyway I am off to Rheumatologist on Wednesday so I will let you know how I go, this is all so frustrating for me and I have only been at this a little while I don't know how you do it after all these years.
I hope at least you have a good weekend.

Sandi,

You still haven't tried quite everything--I hope you'll reconsider.
The little 3-year-old with RA and on Methotrexate is doing so well on his homeopathic remedy, in just a few week's time. He's no longer complaining of ANY pain, which was still at a 3 or 4, even on the Methotraxate. He's running, jumping and playing like a normal kid, and they've been able to push back his shot by another day each week. Latest rheum visit and he said there was zero swelling, which is a first, and that the Methotrexate can be lowered if he has another good month like this one. Plus, some big fears are gone, and he's not chronically constipated for the first time in his life! Mom said that just that last thing is worth it, even if nothing else gets better..

April

I haven't decided against it, April. Just didn't get to it yet. Sorry about that. I have had some personal things going on that keep getting in the way of my time.

Hi Sandi,

Yes, I know how that is--but, if you can get some relief from your pain, you'll have more energy for everything else.
I can be patient.
April

Honest, sorry. I know it sounds stupid to say that I don't have time to take care of something that is a major problem in my life, but I really have had no time. I can't explain. Too personal. I'm hoping things calm down soon.

As a side note - I know the 3yr old personally that April mentioned. What an amazing change in that little boy!! Watching him run around church and play and squeal and not be in pain is such sweetness. Especially after talking to his mom on the phone and listening to him crying from the pain in the background. Her desire was to get him off the methotrexate and he's well on his way there.

Patti,
Thanks for being such an encouragement to that family. It's really sad and seems so unfair when the tiny one's have to deal with these things. You have to rejoice when you see them getting better!

Sandi,
No need to apologize--I hope it's nothing that can't be fixed. Just a gentle reminder that there's still some hope...
April

My platelets have been doing okay so far (don't get my next blood test until November); but, if they do go down, I plan on giving April a try to see if we can keep them up without all the harsh meds. My body just doesn't do well with too much meds of any kind. A year later, I'm still feeling the affects of the Decadron pulses (and IVIG?).

My biggest problem will be dealing with my doctors.

DeeDee,
The more I read on here the more I think that these meds or other factors effect most of us with ITP, it seems as though there is always other problems, pain being a major one. I say good for you, give April a try I had doubts that her remedy for the side effects of medication would work but I tried it and am still using it and it really does make me feel better as far as the nausea and headaches go. I will be interested to see what your doctor says if you give it a go.

I am after thoughts from anyone to my situation at the moment, been on meth now for about four months and in the beginning it worked just fine, no pain but over the last month the pain has returned, first just annoying but lately slowly getting worse. Last night I was in so much pain that I took just 10mg of prednisone and within an hour I could feel the pain going, today I feel great. The doctor will only let me take pred for three days so I can't have this as a solution ( I hate taking it). I am starting to wonder is this really RA because why does a small dose of pred work when a powerful med like Meth isn't. The bloods for RA are still showing negative and I understand the whole seron negative side of things but it is frustrating me. I am going to ask these questions to the DR on Wednesday and also bring up some other things that have just started to happen like at night when I go to bed my legs feel like they are shaking inside of them (hard to explain) and I have been getting skin pain, feels a bit like sunburn but I haven't been in the sun.
Sandi,
sorry to hear you are having problems, life gets messy sometimes. I hope you are ok.

Milly:

I can understand being frustrated with a diagnosis that you can't prove. Makes me wonder if that is the right diagnosis also.

Your skin sensations sound like paresthesia. I have it too. My skin burns all the time, it gets worse when the temp is colder.

Prednisone works better for me too. It's an anti-inflammatory and that is mostly where the pain problems lie. MTX is an immunosuppressant and it works differently by suppressing antibodies.

Milly,
I completely understand how you feel. These meds have so many side effects. One of my friends I have known for many years also has RA (I would say a milder case). I'm fairly sure she got the RA from her breast implants and having a chin implant. The breast implants were taken out years ago; but, she left in the chin implant. It was about a year after her breast implants had bursted that she came down with RA. She's tried some of the meds you and Sandy have tried (including Methotrexate and Imuran). She told me that she thought the Imuran gave her lung problems--some type of scarring and she gets bronchial problems often. She has to stay away from crowds so she doesn't get sick (but she still works).

I know exactly how my body behaves. When I was in my 30's and the doctor gave me a stronger birth control pill, within 4 weeks I couldn't even get out of bed. My body ached in every joint. This has been the way I've been my whole life. I always react to meds in some way. I also react to some herbal supplements and ostershell calcium.

I think both you and Sandy have done a really good job on trying to understand what's going on with your own body and trying to tell this to your doctor. There's always the possibility that you have some type of combination case that is way different from other people. So, it is very important that you continue to research and keep on top of everything like you have been doing. And, see, giving what April had mentioned a try really did work on your one problem. Even if you can take one less med will really help your body in the long run. I was reading an article how the doctor gave this one person a certain med for one problem; then he had to give her another med for the side affect--and then another med for the next side affect. So he mentioned that if you can get by on as little meds as possible, you will have less side affects.

We just have to keep at it on our life's journey. Try to get a little enjoyment when we can.
Dee Dee

Yeah I know what you are saying DeeDee, these meds can cause lots of problems and one of the things that is worrying is that I am taking this strong med for no reason, I just want to be sure it's RA and not something else. One of the questions I ask myself is do I really need the meth when 10mg of pred makes me feel so good, or is it a combination of both that I need. I am hoping the doctor will be able to answer that. I din't think I would be comfortable with Imuren but I will make that decision when I need to.

I think you hit the nail on the head when you said you know your own body, it is just a shame that doctors won't listen.

I am pretty determined to find the answer to all this and I have a great husband that comes to every doctors appointment with me and he can see the frustration this causes me.

Life's journey is certainly worthwhile no matter what the problems we encounter on the way, I believe there is an answer to every problem and I will find the answer to this one and I will have a good long life.

Saw the Rheumatologist today. She raised the MTX dose again to 20 mg's a week. I also left there with two more prescriptions (Leukovorin and Prevacid). Grrrr. That makes a total of 13 scripts that I take, not counting my steroid nasal spray and thrush meds that I use when need be. She switched my med schedule all around so I can fit calcium into the mix (another one), now I'm going to be all confused. She said she would just give me the injectable MTX, but there is now a shortage and it's nowhere to be found.

She brought up Benlysta again and I said "too new" to consider it. She didn't push, just said it would be perfect for my situation. She discussed the fact that I need to get off of Prednisone (I know!) but was still okay with my taking doses on an as needed basis. That has been the only drug that has consistently made a difference in my ability to function. I wish everyone would leave me and my Prednisone alone. We have a very good on-going relationship and I've grown quite fond of it over the years.

Funny story - Yesterday at work I had a delayed side effect from Friday's MTX dose. I got sick at work and let's just say I was stuck in the bathroom. I had an attorney coming into the office to pick up a file, and I couldn't get to my office to get it for him. I texted my co-worker from the bathroom and asked her to get the file from my desk and give it to him. Turns out she had left work early and was on her way to her daughter's basketball game. She called me in the bathroom from her car to tell me that, and asked me if I wanted her to call the guy at the front desk and ask him to fetch the file. At that point, it was so ridiculous that all I could do was laugh. NO - please do NOT call the guy at the front desk and tell him this!

Oh - good luck tomorrow Milly. It's your turn!

Ok so Rheumatologist appointment done, I told him all the things that have been happening like skin pain, shakey legs, red flushed skin, brain fog and he says " I think you may have had a virus, don't really know".
Then we got onto the increase in pain and he increased the Meth to 15mg, he seems absolutely certain that it is RA, so I will go with that for now, I will see if the increase in dose improves things.
All bloods are good, platelets are dropping, gone from 240, 201, 180, last one was 160 but that is still ok (don't like the decline, but still great numbers).
Sandi,
completely understand the love hate relationship with prednisone, nothing quiet does the same job, I don't take it everyday but I will take it when the need arises.
The hard part of this whole Meth drug is you never know when the effects are going to hit you, as your story of the bathroom adventure shows.
So I was discussing with my husband on the way home from the doctors about the way that doctors seem to loose their humanity and their ability to look beyond the meds at lifestyle, diet, exercise, ect to see if there are other things that could improve the situation. But I will continue to do this for myself, thank goodness for the internet.
Those of you that have Lupus, can I ask if this was slow to come on or did it just suddenly show up, did the symptoms show before the test's showed positive?

Yes, do not stop looking for answers yourself. I can't tell you how many times I've solved simple things that were a major problem for me when a doctor just said it was a Lupus thing.

To answer the Lupus question: Mine came on slowly and I did have symptoms before labs could prove it. Well, the myalgia started right after the Rituxan serum sickness. Then a few months later I started to feel like I had the flu every few weeks. It would last a few days and go away. I found out I had an elevated ANA and was referred to a Rheumatologist. He did labs every 4 months or so for two years and as time went by, things started to become positive or elevated. Also around that time I started to have joint pain which was weird. I'd have it for two weeks in my elbows, then for a few weeks in my hips, a few weeks in shoulders, etc....it kept moving but was always symmetrical. I told the doctor and he gave me Plaquenil at that time. Then I did something really stupid and started tanning for my daughter's wedding. A few months later my dsDNA was positive and I asked to be tested for APS antibodies which came back positive. Those were the clinchers for the diagnosis. I was probably headed for it but sped things up with the tanning. I'd already had a slightly elevated SED rate and low C3 and C4. That, combined with a history of ITP was enough.

Those entire two years, the Rheumatologist kept reassuring me that I didn't have Lupus. I was happy that he was monitoring me and helping me to manage symptoms and didn't really care that I didn't have a diagnosis because I really didn't want one. Shortly after I was diagnosed, he moved across the country and I had to find another doctor.

Looking back, I realize how naive I was about everything. I should have seen it coming and although I did suspect it, I didn't expect it. This is one reason why I am so gung-ho to tell people that if you have symptoms and a doctor is dismissing you, find another one. You may not have a Lupus diagnosis now, but one could be coming. Some Rheumatologists are very good about spotting potential Lupus and others just toss people aside since they don't meet the criteria. I was happy that I had a doctor who did continue to see me so that when the criteria was met, I was treated right away before things got too bad. It's the antibodies that cause the damage and if you control those, you can possibly avoid organ damage. People can go for years with symptoms and no labs to confirm it.

Milly & Sandi - I'm reading, just not talking. Thinking of you 2!

As Sandi said, don't give up looking for answers. I think of my friend who years ago was diagnosed with lupus, oh geeze I think it was at least 20 years ago. Well it turns out she had been treated for lupus all these years when really she had MS [that she only found out a few years ago].

Melinda,
I do value your opinion you have helped me more then you will ever know.
I think I will just continue on and see what happens, I just have this Lupus thing parked away in the back of my mind and I figure that the treatment for both RA and Lupus seem to be similar so I will be ok. The good thing is that the blood test are still being done and eventually something will show. I have thought of lots of dx that this could be but I can't live life being scared of something that may never happen.
Sometimes you just have to settle things in your own heart and move on and that is what I am trying to do, I will continue to research things and be aware of any changes and seek second opinions when needed. The thing I don't want is for this to be a worry to my family so it is good to be able bounce ideas around here.
Thanks all.

Sandi
I hope the side effects of 20mg are not to severe for you. Next appointment for my Rheumatologist is not until March 2012.