1st post, new with RA | Arthritis Information

Hi everyone, just found your web site the other day and thought I would say hi and ask a few questions.

A bit about me and my RA first.

About 3 years ago while fishing I found and removed a wood tick and one week later I had some very strange and painful random joint problems. After a couple months Lymes was ruled out and it was later determined I had palindromic rheumatism. All I ever recieved from the doctor was naproxin which helped a little but certainle didnt take away all of the pain. About 8-10 months ago I started to get trigger finger in both my thumbs, about the time my palindromic symptoms seamed to dissapear. A few months later I had trigger finger in all 10 of my fingers, my elbows bagan to crack and pop in ways that were very strange and my feet would become very sore after sitting for a short period of time. At the age of 34 I was walking like an 85 year old man at times. In the morning for about 3 hours I could barely make a fist tight enough to hold a soda can because of the stiffness and extreme pain. I finally went to the doctor again 1 week ago today.

Immediatly after looking at and examining my hands my doctor knew I now had RA and he prescribed me methotrexate and prednisone. I could not believe it but less than 24 hours later most all of my symptoms were greatly improved. Im assuming it's the prednisone since he said the methotrexate can take up to 2 months to start working. Now only 1 week into my meds my right hand feels as it did 3 years ago, not a single problem. My left hand is close behind and me feet feel outstanding as well. Since I have never played with recreational drugs in my life I can honestly say this last week has been the biggest high of my life. Im actually giddy about the way Im feeling. Being a 34 year old welder/pipe fitter, former fisherman and former golfer this illness has been depressing and frustrating for all the things it was taking from me as Im sure it has been for everyone else who has RA. Im so excited to get back home after this current work trip im in and get in my first round of golf in over two years, Maybe even wet a line if time allows for it.

Now my questions. Is this methotrexate and prednisone my miracle drug or does this tend to be a short term or temporary mask for the pain? will I grow immune to it? I know I should be asking my doctor more questions about what kind of drugs he's putting in my body but I just assumed these were going to be more do nothing drugs I have dealt with so many times in the past. Now that Im seeing these great results Im starting to open my eyes a bit more. I realize there are side effects to these drugs but Im not ready to dwell on that yet, for now Im just going to enjoy having my hands again in case this doesnt last very long.

Sorry for the long post but Im just so excited I cant help buttalking about this stuff right now. i guess Im just curious what Kind of experience the rest of you have had with these drugs.

Thanks for your time and for listening

Jon

I'm glad the predisone is working for you. But as you know, it is only a short term fix. I hope the MTX works for you. I have been on it for about a year and have had great success with it. I have also tolerated the side effects pretty well. I had some stomache issues but once I started the injectable form I am pretty much side effect free. I am a bit more sensitive to the sun, but it seems a fare trade off for getting my life back. Hi Jon and welcome to the website. I'm glad you found us. I myself couldn't take Methotrexate and pred but I've read that alot of people do. I know that the pred really gets you going. Every is different so is everyone's story. I found I have been allergic to lots of meds. I also have lots of allergies to other things. Someone will come along with more answers..my hands bother me the most and they are also where I noticed pain, stiffness, and swelling first then it went to about every joint I have. I am doing pretty well on enbrel and today was a great day!

Wishing you many days of feeling well and I love to fish too. I even bait my own hook and take the fish off the hook when I reel em in and fry em up in a pan !!! My dad raised me and lots of people freak when they hear about a woman who loves to fish! I have been

wanting to get out there myself!!

take care

The immediate relief you are getting is from the prednisone, no doubt. It will take a little longer for the Mtx to kick in. Here's hoping you are comfortable until it does.Welcome Jon - I hope for your it's your miracle and you won't have to add anything else. What dose of MTX and Prednisone?

Most of us here try to wean down on the Prednisone after a while. It's a little miracle pill for sure, but long term, high dose has lots of side effects.

Jon, what dose of Pred did your doc prescribe? I am on Pred and Mtx and trying to get off Pred with not too much luck. This is my opinion and mine only, but I would try and get off the Pred as soon as your doc says you can start tapering, because the longer you stay on it the harder it is to get off. If I had it to do over, I would have tried the MTX first by itself along with maybe pain killers. Again, thats just based on my experience. Sure hope things get better and better for you. Welcome to AI Jon. We're glad you're here.

I was in a simular situation 14 years ago. The predisone made a huge difference with in 24 hours. Before I couldn't raise my arms above my head and could baarely tie my shoes. Luckily for me I was able to phase out the predisone and control my RA with various DMARDS.

I've now been on MTX for I guess 6 years now with excellent results. MTX is a long term treatment. We have one friend here that's used it with great success for more than 15 years now. After several years I've added Humira....but that's to be expected. Most of us either have to increase the dose or add stronger medications to acheive the same results. Without the meds I'd be right back to where I started....likely worse. RA is a progressive disease as you've probable learned by now; but that doesn't mean it can't be controlled. There's no cure; but there are lots of treatments that work well for most.

The best advice I can give you is; work toward keeping a positive attitude. Expect the best, don't sit around waiting on the worst....it will come much quicker if you do.

Again; Welcome to our little family here. I hope to see you here more often. There's nothing like having a group of friends (Even internet friends) that have been exactly where you are. Family and friends can be supporitve....but there's no way for them to really understand what you're feeling. We do. We've been there. We are there.

Hi Jon and welcome! I am so glad you are feeling better. I still say to this day that prednisone is my miracle drug, and am still on it a year after diagnosis, but once the methotrexate starts to work, they will want to wean you off due to long term effects from the drug. From my experience, you can be stable on the methotrexate and it change over night and experience pain, and go right back on the prednisone again to help get it under control again. I know some people who have been on and off of it for years. The good thing is that they have found the culprit and now the docs can work with you on ways to keep you fishing and going! I am so glad you have found this support group, as they are all a wealth of knowledge and tremendous support. Hi Jon, welcome!

In the beginning my story was alot like yours. My first appt with the Rheumy entailed a lot of bloodwork and a thorough physical. He sent me on my way with a prescription of prednisone. Like you, I felt amazing. Feeling like a kid again was an understatement. I went back two week later for my re-check and to review all the test results. He said yes, that I definitely had RA, but I wean off prednisone. I felt like someone kicked me in the stomach. Here was something that finally worked and now he was taking it away so soon. He prescribed MTX and wanted me down to 2mg of pred for 5 days, 1mg for 5 days, then then stop. I went back 2wks later for my next check-up and I was in so much pain, worse I think, than before. Rheumy put me back on Pred. until mtx kicked in (5mo. I think) then a slow taper again. I'm one of the few people who loves prednisone, unfortunately it has some very bad side effects. The last time I was on it was for a month, but I ended up taking a whole year and a half to taper off. I told Rheumy no matter what, I will never take prednisone ever again. There are many other options for me, so I have been lucky.

Best wishes. I hope you continue to feel good and mtx kicks in very soon.

Jon -

Are you diagnosed as Palindromic? There are a few of us here on AI.

Wood tick??? Have you had the Igenex or MDLabs tests to confirm? If you have Lyme, you are curable!

Hugs,

Pip

JOn, listen to what PIP said. A wood tick can transmit several diseases. Hi Jon and welcome to the Board. When I was first having problems, my PCP started me on prednisone and I felt great. Also, I wanted you to know that I love to fish too. My husband and I are avid fly fishers and he evened proposed to me on a trout stream. Best of luck to you as you sort this all out...hiking_galWelcome Jon. I'm glad you found us and have started asking questions. We can help you along this journey and having the answers you need is so important.

All I can add to the comments above is, don't be discouraged if it takes longer than the two months your RD told you about. It took at least five months for it to kick in for me, but it's been a good drug. True, many experience side effects, myself included, but folic acid helps with some of them and you may be one of the lucky ones who has no side effect issues at all.

Welcome Jon! Wow! thank you all for the informative replies. I had a feeling the prednisone may be a temporary fix but for now Im going to enjoy it while I can.

My doctor has me on 15 MG of MTX. He started me on 20 MG of pred. 1 week ago. Today I dropped to 15 MG and I am to continue lowering my dossage by 5 every week until I reach 5 Mg a week before my next check up in 5 weeks. Other than being hungry all the time I see no side effects yet. Since Im under weight Im looking at the constant eating as a plus LOL.

Thank you all again for your help and support, It's nice to hear from people who actually know first hand what Im feeling.

Jon

Welcome to the board, Jon!

You might start feeling some of your symptoms to return when you hit 10mg and at 5mg a little more of RA symptoms . Well.... that is how it works for me, anyways.

Hope you get all you enjoy doing done before the next drop in pred!

Keep us posted!

Jon wrote "After a couple months Lymes was ruled out and it was later determined I had palindromic rheumatism."

John, curious to know how Lyme was ruled out.

Thanks,

Ron

Welcome Jon, most of us have a love/hate relationship with prednisone. When you first start taking it you think that all the symptoms have gone. Two weeks later when you've tapered off the prednisone, here come the symptoms again. I've been fighting this disease for about a year or so, tried many different things and asked my doc to add methotrexate at my last visit. It's really done a number on my tummy, I hope you have better results than I have with it. This is a great place to come to, to talk about what's going on within you because we all understand even when your own family can't relate. I'm still interested in the 1) lyme and the 2) palindromic RA. What a bonus if he's got that.

Hugs.

Pip

There is a big difference between wood tick and deer tick. You can only get lyme from Deer ticks which is much smaller than a wood tick. Wood ticks transmit diseases like Rocky Mountain Spotted fever and tularemia.

Deer Ticks are really tiny and Wood tick are those big ones that dogs get a lot.

So glad that pred has helped and soon hopefully the MTX will kick in and you can return to some semblence of a normal life.

Welcome,Both diseases you mentioned are curable with antibiotics, tho. We know the biologics are thinking of adding a black box warning for Lyme disease.

Hugs,

Pip

Jon welcome aboard. I am fairly new to the board and to RA having been just recently dx'ed in June so I don't have much info to share with you other than to say welcome. I know this is probably not the place you would like to be right now but know that you are not alone and there are so many here with a wealth of knowledge in this area and who can relate and share with you. Take care. [QUOTE=Pip!] We know the biologics are thinking of adding a black box warning for Lyme disease. Thanks again for all the kind words and information.

As far as Lymes being ruled out it's just what my doctor told me at the time. He told me that after 3 blood test's with the last one being about 3 months after the tick bite he said It would have shown up in the blood work. Keep in mind this was a while ago now so I have forgotten the actual terms he was using but he assured me I did not have Lyme disease. Maybe just for the heck of it I will bring it up to my rheumatologist again on my next visit next month.

And yes, I was diagnosed as having palindromic rheumatism over a year ago and I just dealt with it. My rheumy told me there were many directions it could go. One would be it will come and go, one being it may just go away or at least go away for long periods of time and the other was that it is the first signs of possibly having RA. Once all of my palindromic systems ended all of the RA symptoms began. It pains me to say this right now But I would rather deal with the RA pains that the palindromic ones, that was a living hell. Once again I could be mixing up some facts or details because of the time that has passed but thats basically it in a nut shell.

One more thing that got me down today. I have been so happy being pain free for the last week and a half that I was really let down last night and today when some of the usual pains returned. On wednesday I dropped from 20 to 15 MG and it was fine for a day but last night my hands started to stiffen up a bit and my toes were getting sore again. This morning I could feel my symptoms were back. On the bright side I did feel better a couple hours after I took my meds. At least I already had my first dose of reality that this isnt over yet, now Im hoping on the MTX.

Thanks again to you all I really appreciate everything you have been doing for me and the many others on this site.

Also, If something I have said doesnt seam to add up please let me know, Gives me something to research a little more.

Thanks, Jon

One more question I forgot to ask. Many of you have mentioned how terrible and hard it is to get off of prednisone or how misserable whe weening off proccess can Be. Some have even said they love being on the drug but will never do it again because it's so hard to kick it. I guess Im just not clear about why it's so hard getting off of it. Does your body start doing strange things or is it just that the typical pains are returning? Right now I just wish I could jump back up to 20 MG because I felt so much better but of course I have not yet dealt with the troubles of getting off of it yet. And no, I absolutley will not be messing around with my meds and doses, Im following to the T like clock work what My doctor wants me to do, I dont want to mess this up. Thanks again, JonBe sure to ask your rheumy about adding plaquinel to the MTX. Most research shows that combining MTX with other DMARDs boosts effectiveness. Since plaquinel is very mild it is one DMARD that can be combined with MTX early. I was started on both right away. Although my numbers ( RF & CCP) point to an aggressive disease, I am feeling like my old self. My MTX has been able to stay at a low dose as well ( 10 MG).

Good-luck. La

I think the last sentence in the excerpt below is the critical one: your bodies normal production of steroids is eventually turned off and you're dependent on the pred to replace them.

Alan

Discontinuation of steroid medications should be done on a gradual basis (i.e. tapered), except if they have been given over a very short period of time. The time of use necessitating taper may vary per prescribing doctor. Steroids include:

prednisone (Deltasone)

prednisolone (Prelone)

methylprednisolone (Medrol)

betamethasone (Celestone)

cortisone (Cortone)

hydrocortisone (Cortef)

dexamethasone (Decadron)

triamcinolone (Kenacort)

Tapering Reduces Prednisone Withdrawal Symptoms

I typically taper if a patient has taken the medication for more than 3 days. The main reason for a gradual taper is that patients may develop symptoms of steroid (prednisone) withdrawal. These symptoms include:

fatigue

fever

Abrupt discontinuation of treatment in patients who have been on steroids for a prolonged period of time may cause severe symptoms due to the fact the normal production of steroids by the body has been turned off.

Here's a better description of what happens from the Mayo Clinic sight:

If prednisone isn't discontinued gradually, you run the risk of developing prednisone withdrawal symptoms. So you shouldn't stop taking the drug without first consulting your doctor.

Prednisone is corticosteroid medication used to treat many conditions, including arthritis and asthma. Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. However, the amount of prednisone used to treat underlying disease is much greater than the amount of cortisol produced by your body.

Because long-term use of prednisone can cause serious side effects, doctors try to use the lowest dose possible for the shortest time possible. Still, there are instances when long-term prednisone therapy is needed.

When you take prednisone for a prolonged period, your adrenal glands stop making cortisol. After you stop taking prednisone, your adrenal glands need time to resume their normal function. If you abruptly stop taking the drug or taper off too quickly, you will develop symptoms of prednisone withdrawal — also known as cortisol deficiency. Such symptoms include:

Severe fatigue
Headaches
Lightheadedness when standing (low blood pressure)
Nausea or vomiting
Body aches

The amount of time it takes to taper off prednisone depends on several factors: the disease being treated, the dose and duration of use, and other medical considerations. A full recovery can take anywhere from a week to several months. If you experience prednisone withdrawal symptoms as you are tapering off the drug, contact your doctor.

I was on up to 40mg of Pred for about 4 years and just in the last 8 months have I been able to taper to 7.5mg. I tapered in 1mg increments weekly until I had reached 3 mg. At 3 mg. I became very ill and my primary care told me that my adrenals had stopped producing steroids and that I should stay on 7.5mg. I may be on this dose for the rest of my life but at least I finally reached my goal. I found that the pain and inflammation would return when I was tapering but I also found that my body adjusted in a couple of days to the reduced dose. Just in time to reduce it another 1 mg. and the symptoms would start all over. It was a long 8 months. LindySorry you had to come here Jon but welcome to the board. you will learn a lot on this board, some things you will want and need to know and other things that just interest you, off topics. The high you are feeling is the euphoria from the prednisone. This drug is intended to help you through the initial inflammation you are feeling. It will also increase your appetite and can interfere with sleep so try to take it in the morning...with food. Hopefully the MTX will kick in and start working long term. There are lots of ups and downs with this disease. You should ask board members about AP therapy as many on here are on that and it seems to be working for some of them especially with the chance this started as a tick bite. I'm not so sure that is not how mine started as I did a lot of hiking during the time my symptoms started. good luck with your treatment and feel free to ask questions. someone on here will have the answer or know where to get it.Sorry, Suzanne - maybe I have my info wrong. Wasn't it here on AI that there was talk about adding the testing like TB? I thought we'd been talking about black box warnings.

Jon - you're one of us! Living hell! Yep, that's Palindromic to a T.

You're the only person besides myself that moved this quickly into RA. I've said here that PRA feels different than RA - you're the only person to see that too.

I don't think you understand about Palindromic - we're the only AI disease with an up to 50% natural med-free remission rate. There is something in our bodies that fights like hell to throw off the disease. Hence the pain levels. I was bummed to go to RA because of that before I could get on AP. But within 3 months on AP I reversed enough to go back to Palindromic and it feels different on AP than not. The pain is muted. Then it goes to lurkers, then nigglers, then it's gone. I mean...gone!

My AP doc says Palindromic is almost always infection. You may not know what tests you had for Lyme, but if it were me, I'd get them redone to be sure. IgeneX and MDLabs are the only reliable tests. The Elisa and Western Blot are flawed with too many false negatives and positives.

Pip