Hi, I am 19 year old male who has been diagnosed with rheumatoid arthritis in my neck, jaw, shoulders, hands, wrists, knees, hips, ankles, and feet. I was first diagnosed with temporo mandibular jaw disorder, but then the pain and stiffness started to spread throughout my body and is continually getting worse without any signs of stopping. I was given Tylenol 4, 4 daily by my family physician for my TMJ pain. I went to a rheumatologist who told me that I was too young to use any kind of narcotic analgesic and she even went as far as to tell me that they wouldn't relieve my pain. That really frustrated me, I am in a lot of pain and I do not know what I should do and know for a fact that the narcotics do provide me with necessary pain relief to lead a normal life. She put me on plaquenil, steroids, and a NSAID. NONE of these even help my pain one bit and i'm suffering every day. I do not understand what I have to do to get some relief except get older, it all makes no sense to me. Should I go see a pain management specialist? This doctor really is not helping me cope at all and I feel like i'm being shoved off and patronized. Do people who suffer from chronic pain from RA generally recieve some kind of narcotic analgesic? I am new to all of this and I just don't know what to think and why would the doctor lie to me about the pills not providing any relief? Thanks for any comments or info about pain meds that you have been prescribed and are currently using.
Welcome to the board, Marshilade, you'll find plenty of help and encouragement here. Don't know about the age thing but what I do know is that RA is a most unwelcome disease. In the weeks ahead you are going to need all of your courage, patience and optimism, but there IS hope ahead. Definitely. Dozens of people on this forum have "been there, done that" and I'm sure most will agree on several main points. First, the meds can take weeks, even months, to kick in. Second, we all react differently to the various meds and sometimes the first med prescribed doesn't work or causes unbearable side effects. In my case I had the same joint pains as you and it took eight months to get the med mix right. Things gradually improved until my RA is now "under control," and I'm RA pain free. Boy, did I need that courage, patience and optimism I spoke about.
You mentioned steroids, is this Prednisone? Prednisone usually relieves the pain fairly quickly but there are other issues with pred which call for regular blood tests. Rheumatoligists usually know what they're doing so have faith. The feeling of being pushed aside is very understandable as you have been hit by a very nasty disease which they don't fully understand but they usually do their best to help.
I'm sure others will add to my comments, meanwhile if you have any other questions please don't hesitate to post again. Good luck and I hope you find the right meds for you sooner than later.- Des.
Yes the steroids are prednisone. I have been taking 2 5 mg daily for over a month now and haven't notice any relief. The only thing I have ever taken that seemed to touch my pain were 15 mg Roxicodones and 20 mg oxycontins. I also seem to be getting wierd rashes near and around the affected areas, they asked me if I have had any rashes everytime I go there so when I first got one I called and told the rheumatologist, but she said it had nothing to do with arthritis or my meds so once again I was confused. I haven't slept in 3 days and am now getting a new itchy swelled bubbly rash all over my arms, legs, and stomach. I also am getting these wierd finger nail like scratches on the sides of my stomach, I actually have scabs from them bleeding and yet another symptom goes unexplained.Hi Marshilade,
I don't know if your age has anything to do with it. My rheumatologist won't give me painkillers either and I'm 52. Someone here on the boards said I might have to go to my primary dr. because rheumatologists are reluctant to give narcotics.
Welcome. I think you'll find lots of help and encouragement here.
First, you are not on enough prednisone to affect your inflammation. There are also anti-inflammatories like Celebrex and Mobic that are not opiates that can help significantly with your pain. If you are needing that level of pain medication, there's a problem that your doctor is not addressing. How are you getting these meds? I hope you are not getting them off the street. That's really dangerous and will keep you from getting the real help that you need. If you do need that kind of pain relief, then yes, see a Pain Management Specialist. But you still have to be careful with those. You don't want to get addicted to these pain meds which can have some really hard effects on your body. This might be what your doctor is worried about with your age. RA is a progressive disease and if you start with that level of painkillers then there's nowhere to go if things get worse. You will build up a tolerance to the pain meds and getting relief from pain will become really difficult.
However, you obviously need more help than you are getting. Prednisone will lower the inflammation and 2.5 mg is a very low dose. Most people need higher doses until the other meds kick in. Many times, docs will give you a Pred pack which is a high dose that is quickly tapered off. You should ask her about the possibility of that.
If Ron, is right, then you could have Lyme disease which is treatable and cureable. But it is very important to get it treated right away. You should go to your primary doc and ask for a Lyme disease blood test. You may have to push for that because the test is expensive. Push anyway if your rashes look anything like that.
Also, since your Rheumy isn't taking your rashes seriously, get yourself back to your regular doctor, see what he thinks and possibly get to a dermatologist. Rashes with RA can be very serious problems and they need to be attended to with high doses of prednisone. You could be having an alleric reaction, but that seems doubtful with your description.
You have to get back into one of these doctors and get some answers. You should not be ignored because of your age. If there is no other choice, then try to get another Rheumy.
The kind of drugs you are trying are used for severe cases with irreversible damage. You don't want to go there. Corrent treatment of your illness will reduce your pain.
One more thing. Do you have a good relationship with either of your parents. Would they be willing to go to the doctor with you and advocate for you? I have done this with both of my kids, especially my daughter. Tell them what your concerns are BEFORE going to see the doctor and that you feel that they are blowing you off just because of your age.
If you have a parent or someone that can sit in the room with you, doctors are less likely to push you to the side.
Sure hope you feel better soon.
One arthritic disease that causes rashes is Palindromic Rheumatism which is a lot like RA. I will post the info site below for you to compare notes. Another idea is Psoriatic Arthritis possibly and it is treated with the same RA meds. I have rashes and tiny bumps/sores. I agree that 2.5 mg Prednisone is way too low a dose to have any effect at first.
I am still looking for the right combo of meds for my RA but in the meantime am using narcotic pain meds. My PCP gives them to me. As someone said rheumys don't really like to do narcotic pain control. If you feel you need them while looking for a med combo to work I recommend a pain control clinic.
I am glad that you are searching for answers as sharing will help you get through your days. It is the pits but there is positively life after RA/PA.
http://www.palindromicrheumatism.org/index.htm
Deanna,Marshilade,
Did the rash start before or after you started taking plaquenil? You can get rashes if you are allergic to plaquenil. My doc told me 'if you get a rash, stop taking it right away.'
Definitely you're not on enough prednisone to do anything for severe inflammation or a flare. That low dose is a low, low daily maintenance dose.
And I second the other comments on NSAIDs--trying a variety of them is sometimes necessary to find the one that works for you.
A combination of max dose Celebrex, max dose tylenol, asprin cream, and self-help measures (heat and cold treatments, etc.) along with the RA treatments and high-dose prednisone packs for major flare, has finally given me enough relief most days to function--to work and have some kind of a life.
That doesn't mean that this is the solution set for you, it just means it takes time, experimenting, adding this and trying that, to get both pain and disease under control.
Unfortunately the disease doesn't go away, and the pain may never go away either--getting to tolerable might be as good as it gets. Or you may be more, or less, fortunate than that. At some point we all have to come to terms mentally with living with pain. That's not to say we should live with any more of it than is necessary, just that part of the pain adjustment is a mental one. It's not easy, and it's a lot to take in at any stage of life, but especially when you're still young.
As for the narcotic drugs and age, I guess the doctor's concern is at least partially because the effectiveness of those drugs wanes over time and you have to keep upping the dose to get an effect. Since RA is chronic and progressive, they try to avoid giving narcotics for it except as temporary bridge measures while waiting for longer term treatment to work, or for more severe or advanced cases.
Since you're 19 and apparently new to the disease, I would imagine that if they start giving you narcotics regularly now, you would still be quite young by the time they were doing you no good at all--not a situation you or they want to contemplate.
Since you already have experience with the stronger narcotics, for whatever reason you've taken them, there may also be a special concern about chemical dependency, which as the others said is its own nightmare. As hard as it may be to imagine when you're in so much pain, it's possible that the doctor's reluctance to give you narcotics right now is actually sound thinking.
Obviously none of us is a doctor (though we enjoy playing at being doctors and nurses around here a lot
Before I was first diagnosed with RA, my GP put me on 5 mg. of prednisone. Since it didn't do anything at all, I thought she was nuts when she said I had RA. She upped the dose to 20 mg. I got relief in just a few hours. I'm going through a pretty bad flare right now, and I've been coming down on the prednisone (it really is nasty stuff), so I was reluctant to take any. After the urging of some friends, I took 10 mg. this morning. The reaction was miraculous. My feet, which were big, painful lumps, are feet again. The terrible, crippling pain in my shoulders vanished. My hands work again. My hips and knees don't hurt.
First off I am sorry to hear that someone at such a young age is diagnosed with such a painful disease. There is hope and I agree with the steroids, they do give relief... But I think those along with the pain killers your body builds up a tolerance.. I get shots in the real bad areas such as my shoulder.. This does help me for a few weeks and then it starts bothering me again. I know your in pain however if there are other alternatives besides nargotics, please attempt them.. I say this like the others, your body builds up a tolerance and as you get older you will run out of options.. Good luck to you and I am new here as well and looking for ways to ease the pain to. Iagree with the other person that says take a parent with you. There are so many people out there today making it difficult for the ones that really need help such as yourself, and a parent sitting in on the visit would be a positive on your side.. This will show the dr. that you are not a " kid wanting nargotics" .. Just my thinking
You could try looking at fish oils, like OmegaXL
K~it's already been said; but I'll say it again. I don't think the amount of narcotics you are seeking is advisable. Obviously your RD agrees.
Now if you had just had some sort of surgery or something I could understand it; but to prescribe those to you with your symptoms on a regular basis is somewhat neglectful on your doctors part.
Once you get your RA under control you won't need them like that anymore.....unless of course you're addicted. Obviously what your doctor has you on isn't working. He's going to have to be more aggressive with stronger DMARDS, Higher doses of predisone and probable a Biologic. You actually have a lot of options.
Proper treatment will slow the progression of the disease which is the goal. It's a long term solution where as killing your pain for a short while with narcotics is a HUGE mistake at this point in your life. It will only help you as long as that dose last. A few hours at a time......that's a short term solution that really shouldn't be used in this situation.
Good Luck to you. Welcome to AI. Hope you can get to a better point in your treatment soon. The beginning is always the hardest. Hang in there.
The trouble with narcotics is that they do not treat the disease - they let it progress. And because they mask the pain msg you will over work your already stressed joints. I can think of no other way that will make you a cripple quicker.
If you really treat the disease most of the pain goes away (to the level that a tylenol helps), so does the stiffness, so does the fatigue. You actually start to feel well enough to live your life.
Choose a real treatment rather than just masking symptoms. I am for pain meds when needed as long as you are also treating the disease.
I use pain meds don't get me wrong; but I've also worked really hard over the years to get my RA under control and that has been the best pain relief of all.
Save the pain meds for the really bad times. You'll have plenty of those.....don't over use the pain meds or that won't do much for you when those times come.
Quote from Marian"If you really treat the disease most of the pain goes away (to the level that a tylenol helps), so does the stiffness, so does the fatigue. You actually start to feel well enough to live your life."
I am so glad that has happened for you Marian. I agree w/ others that think narcotic meds might not be good in this instance. But not all of us react to the DMARDs and Biologics the same. My RD tells me right now is as good as it will get for me because the pain I feel is residual from prior damage. Over a 5 year period I have had to use pain pills (currently Percocet). If I did not I would not have any life at all.
Depending on how quickly you are diagnosed and treated and how severe/aggressive your disease, narcotic pain pills are not always a bad thing.
Just my opinion and I so wish I did not have to take them. You are very lucky. I have been on MTX and all the biologics including Rituxan and have become allergic to them all, as of yesterday I found out I am now allergic to MTX, due to severe mouth and stomach probs along w/rashes. So now I don't even have that to fall back on.
You're right Crispy; in all cases such as yours and MANY other's here narcotics are your best bet for a life you can manage......but we're talking to a 19 year old child that really has yet to explore options in treatment yet. Where will this kid be 10, 20 or even 30 years from now?
If they do not get on a proper treatment plan and get this under control now they have a life time of pain ahead of them. The pain pills this person is on now will do nothing for them even 10 years from now and where will they be? 29 years old and crippled with little to no options?
I just don't want to see this kid end up like that. Although this person in question might think our advise is a little harsh; I'd be willing to bet they'll be thankful for it in the future if our predictions are right.
Oh Crispy I am really sorry. Looks like you have given it your all to get it under control.
I am not against pain meds, I'm against not treating the disease. I spent more than 10 years taking only nsaids - no dmards at all. When things got completely out of control I tried gold inj. Eventually I had a CNS side effect that lasted most of a year. Then I was too terrified to try anything else for many years.
A good doc who really cared argued with me and showed me more options than nsaids and pain pills when when I absolutely couldn't cope.
I have had this rotten disease in a mild/moderate form for most of 30 years. Both knees and elbows are ruined and needing replacement. I really don't know if it will do that much for me because my feet are really painful. If I shop for an hour or an hour and a half, I 'pay' for the better part of a week. Lots of weeks 'I don't care to shop' read that as hurts too much to get off couch.
I want others to really fight the disease - not just be tough guys and keep on going, and not to live by only masking pain.
I really thought nsaids helped protect one from RA - the swelling goes down and so does the stiffness when you get on the right one at the right dosage. It really felt like it was working....while RA progressed.
Peace OK? I just can't stand for this young guy to go down the cripple path with me.
Crispy, I'm so sorry to hear that you're allergic to the MTX as well. I know that this is devastating to you.
Yeah, Deanna it is. Im pretty much out of options and back on 20 mgs of pred a day.
Marion and Lovie, I totally agree that the young person we are talking with on this thread needs to get treatment, not just pain pills.
But we can't just paint with a broad stroke that we will all be able to get our pain levels down enough to just take an occasional tylenol. Cause that just doesn't happen for a lot of people.
Sometimes there are no easy options. Its hard to read about folks that young getting RA. And I agree that getting RA under control is not something that we totally have control over. I would just add that IF narcotics have to be part of the plan at any age, that for me they are best used in low doses to help take the edge off the pain, NOT get rid of it. High levels of constant pain can be as mentally and emotionally disabling as any illness is physically. Best wishes to many good years ahead.Thanks all for the advice. I know i probably would end up in a lot of trouble down the road if i started heavy use of narcotics at this age. I just want some relief. I also wanted to know if anyone is able to offer any advice on getting financial aid for my prescriptions? My parents are going A-wall.
Post this as a separate topic so that more people will respond. Also do a search on Patient Assistance programs. At your age, your parents might be able to get some help from the state based on medically needy. For instance, I could get my son's medical covered if he was under the age of 21 even though my income was too high. He didn't need coverage so this was of no use to me. He's the healthy one in the family. But something like that might be available for you and that would help your parents out because then they could focus on helping you get through this.
I certainly understand wanting something for the pain. There are times when I hurt bad enough to want anything that is available to me. But there are huge consequences if you are not smart about yoru pain management. I think you are smart and asking questions. Also, it might help your parents to read some of the info on this and other forums. Several family members have posted and asked questions. We do get a lot of parents looking for answers for their kids.
And do keep posting questions.
Ok, thanks for the info Deanna.