I've been slowly lowering my prednisone dose over the last couple of months to find out whether methotrexate is working. I've been on mtx for over six months now. As I've lowered the pred, my symptoms have worsened again so I saw my doc this morning to go over my most recent blood tests. As I expected my CRP and ESR have been going up again, mostly the ESR which had jumped from under 40 to over 60.

Looks like the mtx hasn't been working so the plan is now to increase my weekly dose from 15 mg up to 20 mg and then to 25 mg if necessary. I guess the higher doses increase the risk of side effects.

D'Darn it Wendy. What a shooter. Just soooo hope that this pain circle caan be broken. Many (((HUGS))) lass -

Molly C

Hi Wendy, Im not doing to good with this stuff...Im up to 15mg and tired of being sick. My condition has gotten worse over the last 2 months and im pretty convinced its not working for me. I know you have RA as i have AS. Is this your only option? I am thankful that i have other options and looking forward to trying them.

You mentioned you have been lowering the Pred and your symptoms have worsened. Wouldnt this suggest that its the Pred thats been helping and not the MTX?..i might have got twisted somehow.

Hi Reese,

yes, that's what I think it is. When I started mtx, I had a CRP of about 110 and my ESR was close (about 100). I could barely walk or move and mtx was going to take a long time to kick in so I went back on prednisone. My doc agreed that I should stay on a low dose of it until the mtx had a chance to work. We were worried about internal organ damage with my inflammation that high.

My blood tests showed steady improvement. I'd lowered the pred to 6mg per day and stuck at that for several months. Finally, we decided it was time to start lowering the pred to see if the mtx had worked. I've been lowering it VERY slowly - less than 1mg per month. Now I'm much worse so the speculation is that the mtx has not been working and it was the low dose of pred that was continuing to lower my inflammation rates.

I'm now going to increase the mtx to see if that will work.

If it doesn't work, there are other options to try. I think it's a case of working my way through them.

Thanks Molly. It's pretty crappy right now. I can't believe how many joints are involved - hands, wrists, elbows, shoulders, sternoclavicular, hips, knees, toes. Can't raise my right hand above my head at all because of my right shoulder. The left is slightly better but still miserable.

wendy, sorry to hear this, you work so hard, so methodically and logically at this, just not fair that its been such a rough road. if the mtx really doesn't seem to be working, even at a higher dose, what do you think you will try next? hope you get some better relief soon, you SO deserve it!

Hi Sue,

Thanks for your support. It has been a rough road and still is!

One of the links I posted has a great chart that helps to see what the progression will be. The link is the first one I posted, Diagnosis and Management of Rheumatoid Arthritis. The chart shows treatment approaches and suggests that, if 15mg of mtx per week doesn't work, to increase to 20mg or 25mg although it might be necessary to switch to injections at that point because the risk of nausea goes up with increased dosages.

If that doesn't work, the next suggestion is leflunomide (Arava) or azathioprine (Imuran). So I guess those would be the next possibilities.

I hate how long it takes to test each one.

it does seem to be a very long time, and i am most impressed by the amount of patience you demonstrate through it all. you certainly have managed to keep your head through it all far better than i think i could. we're all rooting for you!

Thanks so much, Sue. I must admit to having moments when I feel slightly desperate to fix it all. That's when I have so much sympathy with Chris (Tiredofpain) who is in a permanent flare.

Are you back at work now? Has your pain improved to the point at which you are able to work again?

well, if you do have moments of desperation, your sense of patience and level-headedness win out by far.

as for me, my upper back is finally a lot better. about a week ago i drove to work and it didn't seem to bother me at all, finally, took about 6 months. this past week, SI loosey goosey and been sitting on ice and heat, but really productive in the recliner, love my macbook air and wireless. so technically i could "go back to work" but also on sabbatical and can work from home, so doing that most of the time, papers and grants. go in when the students need me. thanks for asking, it was a really rough time. and as you mentioned for chris, those of you who seem to be just in constant pain for much longer than me, well, i have so much respect and admiration for you. and so glad to hear how much the MJ seems to be helping chris, i can even feel it in his posts.

Well, that's great news if you can go in to work when you need/want to, Sue. And, yes, I had noticed Chris sounding more cheery. Isn't that great?

hi Wendy, sorry to hear that the mtx hasn't yet been doing the trick for you - I hope it kicks in really soon! You mentioned the risk of nausea with increased doses and I wanted to share my experience with this. I had some nausea originally when starting on 15mg mtx, although over a few months that subsided, to the point where it didn't really bother me anymore. Dosage increases in 2.5mg steps had a minor impact, I maybe noticed it for a week or two, but was on 25mg orally for quite a long time without any problems. I recently jumped from 17.5mg to 25mg in a week without feeling it, as my body has previously been on 25mg!

I have heard though that switching to injectable mtx can improve the rate of absorption, although that's not something we'd looked at and I'll be coming off the mtx in time after starting humira.

Good luck! I really hope you find your magic dose soon!

-Anke

Will be watching to see if the higher dose works for you. Hoping it does.

Due to infection, I'm off the mtx till April. Have a referral to ENT to see if they can figure out why the sinus infections/inflammation return so frequently. The big steroid shot in early Feb has worn off, so pain levels are going up again. I'm pretty sure the mtx was working, but couldn't keep the infections under control this winter.

There is a gal at work that is on imuran for chrohn's and it's worked well for her....not that it's the same disease...but it is autoimmune.

Thanks Anke - that's very encouraging. I have been nervous about side effects, particularly nausea and hair loss.

Thanks Rumble. Did she report any side effects from the Imuran?

Wendy,
I feel your pain. I've been on 10mg pred for months while trying other meds. now I'm on MTX, too. Took 10mg for 3 weeks; Took 15mg on Friday. Not really noticing much difference, except that my SI and hips are more painful. What's up with that?

Are you going to increase the pred or suffer with 6mg?

I'm going to take the pred back up to 6mg (I'm on 3mg right now) and hope that holds me together while I increase the mtx. At 6mg, my inflammation levels are held in check but I'm far from pain free.

Imuran not an issue. She hates being on steroids and says that others around her hate it too....she gets 'difficult to be around' when on steroids, she says.

I am under the impression that since the body produces about 5mg on its own, that taking doses less than that is not beneficial anyway. What do you know about that?

Also, are you taking folic acid? I asked my doc and he said he'd only prescribe folic acid if I get mouth sores. To me that seems to be overlooking other signs of deficiency. My only thought is that he doesn't want any supplements to interfere with the effectiveness of the MTX unless necessary.

Thanks Rumble, that's interesting to note.

Hi mom2many - I think you're probably right about doses lower than 5mg. My symptoms became noticeably worse after a few days on 4mg and worse again on 3mg. My plan was to taper off entirely if the mtx was working so the 3mg was just a step en route and not intended to be a therapeutic level.

I was taking folic acid daily but when I began to suspect that mtx might not be working, I also dropped the folic acid for a few weeks to check that it wasn't interfering. Seemed to make no difference. Now that I'm going to increase the dose again, I will go back to taking folic acid at least to start with. Don't want to risk side effects if at all possible.

Well, at least I've figured out why today has been so bad. I was getting quite worried - both knees are really swollen and my wrists have got so bad, I couldn't even consider playing the piano and typing has been painful. Just discovered I didn't take my celebrex this morning. I've done this before when I dropped it on the floor but this morning it had got jammed in my little pill box. I decant a week's meds into the daily compartments of my pill box because I'm taking so many it's the best way of staying in control. Didn't notice that the celebrex, which is a capsule, so long rather than round, had jammed and when I tipped out the little pile to swallow them this morning, it stayed behind.

Just figured it out when I went to get the evening dose!!!

I'm a bit relieved because now I know I won't be quite as bad as this tomorrow.

That's happened to me, too. I have 2 pillboxes to cover 2 weeks of meds and refill it every 2 weeks.

one morning i found my muscle relaxant in the pocket of my robe the next morning, another time in my pants pocket. doesn't happen often, but explains why i don't feel its effect.

but always good when feeling bad is from not taking the med, rather than from something else. at least its an easy "problem" to fix.

I've heard that mtx can take up to 6 weeks to take effect. Dosage changes also take a few weeks... I only take folic acid on the day before/day after my mtx dose. For me it definitely helps - I had a spate of mouth ulcers at one point making life uncomfortable (which I also used to get pre-mtx, although these were worse) - increasing the folic acid dose fortunately sorted out that problem and I think it's now been over a year since I had one!

I don't know the doses. It has been too long since I took it but my hubby is sticking with 8 pills daily right now. He thinks it is helping him. He had to be off of it during the surgery activities.

I hope you feel better soon Wendy.

You are too sweet to hurt.

Hugs.
Possi

I am going back on Imuran. I took it 9-10 years before and had to go off of it to try the Remicade. Wish I had stayed with it.
I am down to 3 mg. Pred. Next week, I go to 2 mg. My joints are so much worse but I am determined since my intestines are so thin because of them. I have taken steroids for many years lots of times at 60 mg. and even 100 mg. solu-medrol in the hospital. It is tough on a person. I have been told that your body makes 7 mg. Pred. Still it is so tough to get off of it.

Just throwing in my little bit about the Imuran.

Hugs to you all.
Possi

Hi Possi,

When I went to the Doc it was clear that the mtx wasn't working because my ESR and CRP were up so we agreed to increase the mtx. However, I was getting so bad that we decided to up the prednisone again while waiting for the higher dose of mtx to kick in. I'm planning to stay on about 6mg, low but hopefully just enough. To kickstart the improvement I'm doing a taper: 3 days on 10 mg, 3 days on 9 mg, I'm now down to 8 mg. I'll keep going down every three days until I get to 6mg again. I'm not worried about doing it slowly because I haven't been on the higher levels for long enough to worry. So I never got below 3mg.

I have to say, I could sing for joy that my pain levels are back down in the 4-5 range again!

Wendy,
Hi. I hope you are feeling better.
My blood tests were fairly normal, but it showed that my uric acid was "quite high". But He said, You donot have "gout". Never before has my uric acid been high, never in my life. So I am wondering what chang is going on. Any ideas.
I am ready to go on one of the big guns. My best to you and I hope your body is ready to let you have a good Spring and Summer.
agape'
Lon

Hi Lon,

Sorry to hear about the struggles your body is having. No one would guess from the way your mind keeps driving forward with determination!

I don't know much about elevated uric acid but a bit of research suggested a couple of possibilities which could apply - one is a response to medication. I'm not sure what you're taking right now but some medications can cause increased uric acid levels. Another possibility is diabetes - do you have diabetes in your family or any diabetic symptoms. Another possible cause is impaired kidney function which could occur because your kidneys are being affected by inflammation.

Apparantly you can modify your diet to reduce the amount of uric acid in your blood.

Here's a link to a website with a list of foods that are high in purines (that lead to high uric acid). The site talks about gout which is often caused by high uric acid so, even you don't have gout right now, you could develop it.

http://www.goutpal.com/foods-high-in-uric-acid.html

Best to you as well, Lon. Hope things improve soon.

My Dear Wendy,
Wow thanks for the info.
My heart Dr. made two other appointments, Suggesting that the chronic pain with hereditary is causing me BP to be so high..
I am borderline, diabetic, both parents were also, I do have kidney problems, as did my Dad and his Dad. You have given me a lot to think about. I will have insurance for one more year, maybe I can get some things figured out.
Wendy, thank you, thank you so much. It has been a real blessing to come one today and see you and hear what you have to say. but, my dear, when I see you with that kind of tired and perplexed look, I want to get in my old buick, drive over to your house, and see if I can make you laugh>
I hope that you are feeling better, that you have a good day and that your life is filled with love and satisfaction.
agape'
Lon

Don't worry, Lon, my sweet funny four year old granddaughter is here today and she generates lots of laughts and fun.

Hugs

Wendy,
Sometimes I ache for my grandkids.
But I donot have regrets as far as having fun when I am with them. Our 10 year old red head grandaughter is gong to be in the state of Kansas spelling BEE. She is so much fun, when she calls on the phone, she has a very low voice and talks kind a quiet. She often says, very deeply "stop it grandpa, you are just kill'en me"...
I got more details on my bloodwork. My heart is not pumping quit enough for the kidneys, liver, so thy platelets are way down, aunto immune illness sets in, affecting the bone morrow. Which causes exhasutiion! Now I know why I am so stinking tired.
Thanks Wendy, you are a good friend. But I do worry about you.
agape'
Lon

hi Lon,

Sorry to hear you're having such a difficult time at the moment!

I think that apple cider vinegar can also help reduce uric acid levels in the body, and therefore hopefully decrease some of the pain. I've been 'supplementing' with 2 teaspoons of ACV and 1 teaspoon of honey in a mug of hot water twice daily for some time (when I remember!)

I first heard about it here, of course, so it may be worth doing a search for more info?

All the best, I hope you find something to help!
-Anke

Hi Lon,

I worry about myself from time to time, especially because none of the DMARDs have worked so far and yet my symptoms came on so fast and furious. I think a slower transition would have made it easier to cope. But still - most of the time I feel reasonably positive and I manage to keep working.

Like you, my work gives me great satisfaction. As you probably already know from previous posts, I work with young offenders and high risk kids, finding ways to support them to develop the skills and strength to overcome some of the horrific family and life situations they have suffered through. We have lots of great successes but we also deal with many tragedies and have to watch for symptoms of vicarious trauma.

Sometimes, that creates a great sadness in me and makes me realize that all the pain and struggles I'm dealing with now are nothing compared to the mental and physical anguish of some of these abused children who have been denied the opportunity for a happy life because their early trauma has left them too damaged to recover.

So... if you see any of this in my posts, my warped sense of humour or in my face, it's probably true. No point worrying about me though - any more than we all worry ourselves silly over you!!!!! We are each making a choice in life....................

Anke,
Thanks a bunch.
I will try it. Is this like a tea drink for you?
Native American friend was making me some tea a while back! I loved it!
Lon

Wendy,
It is with mixed emotions that I read your post.
I love you for the hard work you are doing for those who can not help themselves. I am so angry with some adults and the abuse and neglect they give thier kids. I have two grandkids, I am unable to see, and I miss them.
I have been invovled in making it more difficult for parents to abuse children, but it seems our society often thinks more of pets than they do kids.
I have been pain all my life, I think that is why I ran whild for a few years. But I understand about it coming on real quick and how frightening that must have been! When I have a flare now, it always seems worse than before.
Does fasting help?
You are a good friend, I pray that something will change and you will get some relief. Some itme ago the head of a children's home walked into my office and said that she wanted me to meet one of her new girls. I went outside. there was a beautiful child, coinfined to the dash. We talked / laughed a bit. She tried to kill her dad everytime she saw him. So they lock her up; but he did not go to jail for the abuse he committed1 We have just got it backward!!
agape'
Lon

Thank you, Lon. Knowing the work you do, I figured you'd understand. Many of these children learn survival skills that get them through the abuse but those same survival skills get them into trouble with society and therefore the law yet it's very difficult for them to unlearn these behaviours despite the difficulties they get them into because they're deeply ingrained. Our job is to help them learn new behaviours and understand that the old ones aren't necessary any more.

Many of them go to jail and, as you said, their abusers often get off scott free.

I've tried fasting and it helps a little. The trouble is, I need energy to keep working so it's a catch 22.

Wendy,
I had a lot of love in my family, but when this stinking disease hammered me my sophomore of high school, I became angry. I understand why kids gith back and why they mess up. How can we get better laws written to protect these kids?
Do you go to an office?
Can you put your feet up?
Are you able to medicate while working?

I am going to a rheumy in Rapic City next month. I hope to get some help then. thanks for the chat.
Lon

Hey Lon - yes I do go to an officel; yes, I can put my feet up if necessary; yes, I can medicate while working. All good yesses and I guess that's why I'm still working. That and prednisone!!

I think the only way we can change the laws to help these kids, is to educate the public about what works and what doesn't so that our politicians start making decisions (and laws) based on research and actual knowledge and not on gut reaction and whatever they think will get them elected (i.e. pandering to public ignorance). A crime is committed, the media jump up and down, the public panic and the politicians start screaming, get tough on crime. Nobody in that cycle stops and says but WHY did this happen in the first place. What are the roots of the social dysfunction that led to the criminogenic behaviour. The current methods are bandaid solutions that don't actually work (the cut just goes septic under the bandaid). A bit like using NSAIDS for AS!!!!!

Oh dear... I'm getting on a rant... hope I'm not offending anyone!

My Dear Wendy,
I certainly agree we need to go to the cause of abuse, who is doing the abusing and get it stopped. I am old enough now to see this thing be generational. As I stay in contact with friends from churches in the past I can see that some behavior no matter how hurtful and devistating they are; become repeated from generation to generation. Building more wharhouses for kids, spending more money - no.
We need a few tough people holding the perpitrators responsible.
Lets unite on being pro child! Did I tell you that my 40 yeqr old daughter has decided to have a child for her second husband? She is so excited.
Did you have a good weekend?
agape'
Lon

That's wonderful news about your daughter, Lon! And yes, I had a great weekend. My daughter arrived back from her trip to pickup my granddaughter but both stayed for part of the weekend and we had fun together.

Wendy,
How are you today?
My knees are just killing me.
I am only doing part of the exercise I have done all my life.
My back is so stiff and painful, I think it pulls the knees out of joint.
My joints are not wearing out, they just throbb.
What areas are you having trouble?
I am hoping to have carpel tunnerl surgery on my left wrist soon. Some Dr. in this area are doing surgery on the lower neck, back to stop that pain.
thanks for listening.
Lon

Hi Lon,

Today I have a headache which is unusual for me at the moment - I think all these pain meds have been keeping my headaches at bay. I have been a migraine sufferer for most of my life but have not suffered much from headaches still starting to take heavy duty pain meds.

However, I have a horrid time adjusting to the time change - it takes me days - often more than a week. So I got hardly any sleep last night and woke with the headache. I'm walking around in a codeine-induced stupor but the headache still hasn't gone. Grrrr......

Otherwise I'd be in a good space because the sun is shining and my youngest son is visiting from the city and we don't see him all that often (he's 27).

Sorry you're not feeling so good. Big hugs and kisses winging their way to you to try and lift you up.

Wendy,
Light snow is falling, yea!!!..
I do not think I have had a migrain, but once I got on the c-pap machine, nealry half the head ache went away. I was not getting enough oxygen. sometimes during the day, I have to take a hit off the inhaler and then walk a bit to get the headache to die down.
Are you visiting with your son?
We just bought our tickets to Seattle, so we look forward to that trip.I usually get real stiff, from the ride and then more sitting. even though I do walk several times a day if I can.
What do you think about the geridia in the water?
I hope you will find osmething that helps with the pain.
Lon

Hi Lon,

I'm quite glad we don't have snow. In fact, we have glorious sunshine and it was about +12 degrees C today. Yes, I'm having a nice visit with my youngest son. We have a little cabin that they are staying in and then they come down to the house at various times - last night they had dinner with us.

I'm very careful about drinking water when I'm hiking and camping (not that I'm doing that right now) because of giardia. What precisely were you thinking about when you asked me what I think about it in the water?

Headache's gone - yeah! Just dealing with the regular joint pains that are not too bad right now thanks to prednisone.

Lon, I have been on Allipurinol for about a year and a half for very high Uric Acid levels. It can cause kidney stones and the uric acid can settle in the joints. The crystals can just cut and be very painful. I didn't have gout either but they thought my pain might get better when it was down. It didn't. I passed some kidney crystals and was thankful they had not joined together to a stone.

Are you on medicine? watching the diet and eating nothing rich?

Best wishes.
Possi

PS They stopped my Allipurinol because I am going back on Imuran and there is a big problem with taking those two together.

Lon, I am so sorry about your lab/med results. I hate it you are having so much trouble. You are too special to have to go through this. You inspire me by going ahead and traveling and doing the things you do.

We got tickets for FL for our grand daughter's graduation in June. Just stepping out on faith. 6 of us from here are going and we are going to celebrate our 50th anniversary while we are there. Can't believe that one! It will be early but we will all be together.

Your little one sounds so precious. There is nothing like grandkids.

Take care of yourself.
Possi

I am going back on Imuran Wendy. I took it for at least 8-10 years and had to stop it when I went on the Remicade. It hasn't gotten here yet but any day now. It does help my Lupus. He put me back on it too quick after stopping the Remicade and my face was swollen like a watermelon. I stopped it and we haven't tried in a while but I have to do something. I am not afraid to try again and I know what to do for reaction if I have one. I am down to 2 mg. Pred and I hurt so bad but I am sticking it out. I have to since my intestines have gotten so thin. I can't afford any more of the tearing and bleeding. I am about to get my iron back up though.

Hope you are having a good week. We had a beautiful day today and supposed to have several inches of snow Sat. I think it has been the longest winter.

Hugs.
Possi

Hi Possi,

I didn't realize that there was another possible medication for you so I'm excited to think you might have an option other than just pain meds. Did it work well when you used it for all those years?

I got my pred down to 3mg but went up again once the doc recognized that the mtx wasn't working. I'm at 6mg now which is enough to take the edge off but not enough to get me to a low enough pain level that I can start excercising. I've bumped my mtx up to 20mg (it was 15mg before) so will sit at this for a few weeks to see if that will help.

Great news about your travel plans and your 50th anniversary. That's brilliant. Robin and I are coming up to a major one on 24th - 31 years.

Possi,
I am addicted to food.
It seems that from my youth up, I have tried to get energy by eating. all my siblings are obese. I do eat wrong foods. I can fast, I can stay on a diet for some days, but then I forget, or someone comes by, or they forget.....
Nice to see you?
Lon

Possi,
In the past I have been on some big gunmeds for arthritis. But when my liver started spewing out high leves I went off. I just medicate, come Sunday mornings, or if I have a wedding or a funeral.

I sure hope you get to take your trip.
I know that I will feel pretty rough by the end of the day when on vacation, but it is worth it.
Our 40 year old daughter is PG, so we are excited to see her!!

Love Lon

Oh, how exciting. I know you are excited to see her. Wendy, it did help the Lupus but all of a sudden about the time my mail order script for 3 months came, the dr. called and said that he doesn't want me to take it. ??? I see him April 6th. I think it is a misunderstanding. There is a big problem taking Allpurinol and Imuran. The pharmacist called the dr. he said and said he was sending it to me because they said they were stopping it. Well, the urologist stopped the Alpurinol and I think that is why the Rheumie stopped the Imuran. I don't think either knows the other stopped their med. No communication.

I have to hit the bed. I am so fatigued and in so much pain.

Hugs to you all.

Possi

They're coming up again tomorrow, Possi! It's my daughter's birthday but it feels like I get the present - having my little Sennen come to visit.