Still waiting for relief | Arthritis Information

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For only having the RA symptoms for two and a half years and seeing the doctor for one year starting with the RA rate at 197 this is the treatment I am taking with very little relief so far. Remicade once a month, MTX switching from pills to IV soon, Plq, Pred, Celebrex, Folic acid, Furosemide and Tramadol 50mg Oxycodone 5mg for pain. Also taking Lisinopril for BP and I am only fifty years old. This is crazy I feel like as walking drug store. No one but me seems to be requesting blood work for liver and kidney function and that is only every three to four months. DO YOU ALL THINK THE BLOOD NEEDS TO BE TESTED SOONER? DO YOU ALL THINK I COULD ELIMINATION A FEW OF THESE MEDS WITHOUT SUFFERING AND MORE DAMAGE?

What you are feeling and going thru is normal.  We all go thru the "I feel like a walking a pharmacy" from time to time.  It does take awhile sometimes to get the RA under control and calmed down.  How long have you been doing the remicade infusions?  What dosage of remicade are you at?  That might need to be increased.  The necessity for the BP meds...did that come before or after starting the pred?  Sometimes the pred itself can cause high BP or the high BP can be a spin off of the RA.  I am 39 and take 2 BP meds because I have it from having RA. 

Bloodwork is done normally every 3 months.  Especially if you are on mtx. 

You might be able to drop the plaq but please talk to your doc about it first.  Remicade and the mtx go hand in hand.  It is proven that remicade works better in conjunction with the mtx.  Celebrex is for anti-inflammatory purposes as is the pred.  My daughter has been on both at the same time so that isn't too unusual to be on both of those at once.  You have to be on folic acid if you are on mtx since it causes a really icky folic acid defiency that you really do not want to deal with.  If you feel that you do not need the pain meds then talk to your doc about it.  If you feel they are too strong or too much, talk to your doc about that too.

I can't really say if you can eliminate any of these without causing yourself further damage.  It really would be something that you have to talk to your doc about. 

***Post edited due to brain fog and forgetting to say some things lol***

grammaskittles39348.4447800926This last Remicade treatment was my fourth and I do not know the amount of the drug I am getting. As for the BP I have had it for almost twenty five years from police work I guess. The pain meds are needed to keep working. Without the combo of Oxycodone and Tramadol it is hard to walk and bend my hands. I am a CSI investigator so my job requires a lot of bending, climbing, crawling and so on. I know from this site a lot of people have needed surgery and all kinds of drugs are being used to treat RA. Do your bones feel tender to the touch not just the joints but even your ribs, forearms the larger bones. I have not had a CT scan should I ask for one.

Billy, man I'm sorry you're still suffering so much.  I didn't know you could get MTX by IV.  Do you have to go in for that? I take MTX and my blood work is done every two months.

Hang in there.  Yeah, I know.  Easy for me to say.  I'll be praying for you though.

Linda

There are times I am very tender to the touch.  Instead of a CT scan...you might want to ask about a bone density scan.  That lights up any "hot spots" you may have regarding any bone loss or deterioration. 

Surgery for replacement of joints is unfortunately pretty common with RA and with OA. You can't really tell if you need any surgery for any joints until you really have a bone density scan and most likely an MRI. 

Yeah, I could see how your job might just give you the high BP lol.  Age really has nothing to do with the amount of meds that you are on.  I was at onepoint on like 13 different things.  I was able to wean off of things as I gradually got better.  From what you said, it almost sounds like you need all the anti-inflammatories you can get.  If you can not bend any joints or walk without pain, you prolly need those anti inflammatories. 

Usually (not always) by your 4th remicade infusion you can start to see a difference.  You may want to find out what your dosage is (they tell me what mine is when I go in for my infusions) and see if that can be increased.  If they do increase it and you still are not getting any relief or feel like you are not doing any better, then it may possibly be time to think about changing up your biologic to something different. 

My doctor has me in for bloodwork once a month.  I don't think I'd want to go any longer than two months.My blood work is every month also. I would get a second opinion if it were me.

Sorry you are feeling so badly.

Hi Billy, been wondering how you're doing.  Remicade should be kicking in for you by the 4th or 5th infusion.  I didn't feel any response from the infusions until after my 5th one.  Your doctor may want to increase your Remicade.  I started on 300mg., went to 400mg at my 4th infusion and to 500 mg. 6 months later.  I'm doing great on this dosage.  If you're taking less than 25 mg. of MXT that also can be increased.  You still have wiggle room with your meds but only if your doctor prescribes an increase.  I have labs done every 2 months.   

Liz's advice is good.  Your meds shouldn't be tampered with.  I know you hate to hear this but you have to be patient a little longer.  Once Remicade kicks in you won't know what hit you....you'll feel like a new person.  I know I do.  Everyone sees such a difference in me and it will happen for you also.  Maybe this month, maybe next month.  Keep us posted.  Lindy 

I think what you are experiencing is normal too. I am a walking pharmacy myself. Two and a bit years after dx they still haven't found a med that works for me. I have been on them all and combo's of them all and I have just had my first round of Rituxan. I now have to wait three to four months to see if it kicks in and makes any difference. ARGH!!! This process is frustrating and painstakingly slow. It requires we learn patience but at the same time we also have to speak up if things really seem that they are not working for us. Maybe your Remicade needs to be increased. I am also on 24 hour morphine that is sorta working but not really.

I am tender all the time...bones and muscles. If you push a finger into my muscles I go through the roof.

It must be difficult with your job to keep going and what an interesting thing you do, I am sure you love it and would hate to face not being able to do it.

I think really, really aggressive RA takes some time for the meds to get a handle on.

Oh and I have monthly blood tests done for my liver and ESR and CRP.

And if you are really still not happy about the situation maybe a second opinion is in order, someone with fresh eyes on the situation. We usually know ourselves what we need and what isn't working for us.
Hi Bearbeall, I can't believe that they don't test your blood more often.  With all those med's you're on.  My Rhumie has me going in for blood tests every 6-8 weeks.  I'm on Methotrexate, Folic Acid, and Enbrel for the RA.  I also have Fibromyalgia and on meds for that also.  They are Lyrica, Daypro, Effexor, Norco and  Perocect for the pain.  Good luck to you.  You want to talk just post me here.  Take care and God Bless.     Dotti51

My doc told me to come in every 6 months for blood work to check liver and kidneys and such.  He said he still isn't convinced I don't have lupus too.  But just wait I will suprise him and prove him wrong. ;)

Good luck and I hope your doc agrees to do testing more often especially with that amount of drugs.

I see a lot post about this methotrexate I need to look this drug up.


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