alot of pain with RA-Any suggestions??

Which RA med worked the best for you?
3
Methotrexate - 50.0%
1
Enbrel - 16.7%
1
Humira - 16.7%
0
Orencia - 0.0%
1
Remicade - 16.7%

 
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Beckysniko
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/5/2009 8:52 PM (GMT -7)   
I was diagnosed with severe RA in January and since that time have tried MTX which I could not take...am now on Prednisone, Arava, Relafen and Enbrel. I have been on the Enbrel for about 8 weeks now and the rheumatoid nodules seem to be increasing in size and amount in my wrists and arms as well as my ankles. I am also having some immediate side effects from the Enbrel but I am hesitant to report it to my doc because I don't want to have failed at another med so early into my treatment!
 
I have severe pain in my hands, wrists, ankles, feet, knees, hips, back and neck that is not relieved with the Relafen and or Ibuprofen. I have been given Darvocet for pain and take 2 every 4 hours and it doesn't seem to touch the pain. I am at a loss as to what to do. The pain can be dabilitating and it hurts to use my hands/arms and walk at times. I cannot work at this point in time as some days I cannot even get out of bed.
 
Does anyone have any suggestions? I applied for SSDI and was denied and will be appealing that decision but am unsure as to how I stress the level of my pain beyond what I already have with my rheumy for support. I feel as if I am being a nuisance at times because I call the office due to the excruciating pain that I have. I am at a loss as to what to do next. Any help or recommendations would be appreciated. Thanks! 
 
Becky

Post Edited (Beckysniko) : 6/5/2009 9:55:24 PM (GMT-6)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/6/2009 4:32 AM (GMT -7)   
Hi Becky, unfortunately it sounds as if your arthritis is flaring badly for you right now. Heat really helps, a heat pack that you can heat up in the microwave is wonderful. Really hot showers help me to start moving in the morning too, change your routines alot so if some part of your body is hurting change tasks. If hands and arms are hurting go for a walk around the block, if legs, stand and do dishes. Changing from upright to sitting to lying. If you lie in bed all the time, you can horribly stiffen up and have muscle seizures. RA is the pits, you really need to talk to your rheumy again and really explain whats going on. I don't know relafen? But prednisone is a hate /love relationship, it works so well for me but causes such massive side effects. I am on humira which has really helped my RA and mtx which seems to keep my inflammation down but not out unfortunately.
We all respond so differently to medication its a matter of trying different combinations and seeing what works for you. They are all horrible toxic drugs with nasty side effects and it really is just trial and error to find what your body can tolerate. I am sorry your in such pain, I hope there are others out there who have much more knowledge than me who can help you with wiser advice. But welcome to HW and keep us posted, golitho.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/7/2009 4:20 PM (GMT -7)   
I choose Methotrexate from your list because it is the only one on your list I have tried. But, I must say I love my plaquinel best. It has taken care of the random fever, fatigue etc which have always been such a huge part of this disease for me.
The MTX and Sulindac have got my inflamation pretty well controlled right now.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/9/2009 12:24 PM (GMT -7)   

Do we have to choose just one of them?  I voted for methotrexate, but I also take enbrel.  I must say that the combination of those two drugs is what drove the RA into remission.  One of these drugs alone was not enough to do that, although methotrexate alone was more effective than enbrel alone. 

So sorry to hear of the pain you're experiencing.  I'm sure we've all been there.  I got through it with a lot of heat, support, and prayer (in addition to having a great doctor).

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/9/2009 3:45 PM (GMT -7)   
I also voted for the Methotrexate.  I took Enbrel for a little over a year and found I could get by without it, however the MTX is a different story.  I'm on the max dose of 8 pills per week and have tried to go down on my dosage a couple of times to 6 pills and I flared horribly.  I really depend on the MTX to keep most of my joint pain at bay.  Although, someone mentioned Plaquinil and it should be on the list of meds because it WORKS, and along with something like MTX can be the perfect cocktail so to speak for some of us, it was for me at one time, and if I could take it, I would!!!

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/9/2009 7:57 PM (GMT -7)   
If I could only take one drug for the RA it would be plaq-it isn't the drug that controls the inflamation the best but it is the one that gave me my life back.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/10/2009 8:59 AM (GMT -7)   

Becky...I know that you hate to keep calling your doctors office because you are in pain, and I have felt the exact same way! One day in the doctors office, I finally told my rheumy that on a scale of 1 to 10 my pain level had reached a 10 and it was more than I could stand.  At that point I was even taking the elevator.  Now he is great at listening to me when I say I'm hurting.

 I also started out on the NSAIDS such as the Mobic, Suldinac and Relefin (sp?) and finally upgraded to Celebrex.  My doctor never gives out prednisone unless it is an emergency.  I didn't start out on the injections until I was a couple of years into treatment, but what I did use was Plaquinil and while it took a few months to get going it really made me feel so much better.  I could climb stairs and for the first time in a long time had energy and a huge decrease in my joint pain, to the point where I could even go to the gym and work out.  Often times it is a matter of trying more than one med to see what works and even with a combo of meds sometimes flares still happen.

As for the side effects of some of these meds, they can be harsh especially when you are first starting out.  When I started the methotrexate, I felt as if I had the flu for about the first month the day after treatment, and could hardly get out of bed.  I'm not sure how you are feeling with the Enbrel but when I started on that one I would feel really hot and flushed and my stomach didn't feel so well but I won't go into details! Anyway most of the time the side effects subside and our bodies get used to the medications.

I hope you find the right medications that will help control your RA pain.


RAGal
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 6/17/2009 8:42 AM (GMT -7)   
So sorry you're in so much pain... I've been there, too.  The surefire way to get rid of it quickly is prednisone.  Of course, that comes with side effects.  Enbrel worked great for me for years, but then stopped working.  Now I'm on Remicade (IV drug).  Plaquenil, sulfasalazine, prednisone are all also in my arsenal, along with ultram for pain relief.  Have you tried 800 mg ibuprofen every 4 hrs., too?

Beckysniko
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/22/2009 8:33 PM (GMT -7)   
Thanks to all who gave advice it is greatly appreciated! I am now off the Enbrel and was switched to humira which was not good for me either and I had a reaction causing tremendous jaw pain and swelling so that is being stopped immediately and we will move on to Orencia. I really appreciate the input and hope to find the right combination of drugs that work for me soon! I will keep you posted... Does anyone have any experience or advice regarding the SSDI aspect?
 
Thanks again for your help!
Becky

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/23/2009 9:14 AM (GMT -7)   
I'm sorry I don't have any experience with disability, but have you tried the Plaquenil that SJ mentioned? I don't use it anymore myself but if you haven't it may be worth a try as it is really good, better than the injections in my opinion (and less toxic).  I could do so much more when I was on it, like the gym but yesterday I really over did it and the instructor commented that I had a great work out, yes for a normal human, but today I can hardly move and every part of me is screaming in pain, so sometimes its about finding that balance, but it's hard to slow down!

tina%52
New Member


Date Joined Jul 2009
Total Posts : 12
   Posted 8/12/2009 7:11 AM (GMT -7)   

I have applied for SSD and was approved.  The SS office told me to apply for both and that SSI was easier to get - this is not true..  SSI is for the very poor so if you are married (as I am) and have any kind of income you will most likely be denied.  SSD on the other hand is for anyone who has a disabling condition and can not work or work a full time job.  Speak with a SSD attorney if possible, I was given advice over the phone.  The main thing to remember when filling out the paperwork is DO NOT LEAVE ANY QUESTION UNANSWERED.  Put N/A or none if the question does not apply, but answer the question.  I've been told they will throw your application away if you don't.  You must be disabled for a complete five months so you may not be able to receive payment for several months but apply ASAP, it takes time for SS to make a decision.  Have a complete list of all doctors, clinics and hospitals along with the addresses and phone numbers.  They will request copies of all medical records (you will have to sign a HIPPA form giving them permission).  This takes the longest as doctors etc. are sometimes slow to reply.  If you have copies offer to send them.  If your caseworker is having trouble getting any records go get them for her/him and fax them; this will expedite your case.  Once all medical records are received they are given to a SS doctor for evaluation.  I have RA, degeneratve disc disease, osteoarthritis, high blood pressure along with several other health problems.  I also had major back surgery and am still in pain and therapy after five months.

If you are denied for SSD, I would recommend hiring a SS Attorney to appeal for you.  They only get paid if your case is approved and according to what I read get only a set amount.  Your payments are retroactive back to the date of your first application so you may receive a large first time payment.  Do not think you cannot afford an attorney, if you cannot work you can't afford to lose.

I hope this helps you some - I was told 99% of people are denied the first time they apply and its usually because the paperwork is not properly completed.  So, make sure you take your time, read all the instructions and if contacted by your caseworker work with them.  Mine was very nice and helpful; I hope yours will be as well.  Don't get discouraged if this takes 2-4 months or longer.  Mine took 4 months and I was getting very depressed, then I received the notice of approval.  I've not received payment yet but should next month. 

Sorry for the length but felt a full explanation wouldl be more helpful  :-)   Best of luck to you.

 

 


CrohnsMom
Regular Member


Date Joined Mar 2003
Total Posts : 57
   Posted 8/12/2009 10:26 AM (GMT -7)   
Hi Becky. I did not get a feel for what your physical activity is on a normal day from your post. I suggest, rest your body for a few days. Don't lift anything, try not to use the stairs if possible. When I strain any joint, I have to stop using it for the inflamation to subside. Also, I just started Immuran for my RA. I am only two weeks into this treatment but am crossing my fingers. I was alergic to Plaq. Methotrexate affected my kidneys. My daughter takes Immuran for severe Crohns. When I asked my doc about it he said it was actually his next choice for me. So far, a little stomach upset for the first few day and it has now subsided. I hope you feel better soon. Remember to give yourself a break.
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