Out of remission:(need to choose meds | Arthritis Information

 

oh rats.. I was in remission for a full year and end of march I am swollen in hands... cant open water bottle, write, I am in MAJOR and CONSTANT pain.
I need to get this under control by fall as I got accepted into a nursing school and need my hands for clinical. Last time I was on meds.. I was diagnosed in 2006, was on methotrexate, avara, enbrel, and I of course took advil, tylenol..... well the medicines made me soooooo much worse. avare worked for ra somewhat but I hated what it did to my hair and that I couldnt drink....
I will be 40 in 4 months.... I guess its turning downhill already:(
I am eating salmon almost every day.... I would rather do a natural method but I am worried about this clinical experience. I know the meds can knock your immune system to the ground... and sometimes make the ra worse. The enbrel made my throat close up, numbness on face so I stopped that. I will never take methotrexate again... I wont go there.
Anyway, I started taking advil.. in am and pm... but then my heart started racing ... it also happened when I took aleve, I can manage tylenol arthritis but it doesnt work good at all.
I have threekids.. I cant be down and out. I am going to fight this and win because that is my attitude. No disease will keep me from life or love!!!
I need some suggestions from this bright group of people here. Can you please recommend some things I might do. I feel like I had a fist fight with someone..
I dropped a cup of coffee last week and I know it is hitting me hard. hands are losing dexterity each day.
I also am panicking because I have to have a physical before starting the clinical. I am so worried they will kick me out of the program. I currently have a 4.0 and I know I could make a good nurse.
I dont want to loose out on my dreams ...but hands are going on me... and I am scared.

what might work... without causing me cancer or such. I need something mild.
what about natural methods..
boswilla,ginger, tumeric,etc..
has anyone heard of phosplex?

I didn't know you go off meds when you are in remission. I thought it was a life long thing.

I was in complete remission, no symptoms anywhere....
I had more when I was on the medicine. The ra did get worse for a while when I stopped the medicine but then I was fine. I never needed anything.
But now it is a different story. I am looking at plaquenil, maybe remicade.. but I am afraid.
I dont think I will get an appointment for a while with RD maybe my PCP. I am in big trouble with this imflamation if I can't get it under control.Donna, I admire your attitude.  So sorry you find yourself back here.  Instead of the OTC NSAID's, maybe the PCP could prescribe you one good prescription NSAID?  What about a short burst of pred to get you on the right track until you see the RD?

 

As far as natural goes, I don't have much to offer other than to mention SAM-e supplements.  They are supposed to help joint pain, as well as liver toxicity (which of course the NSAIDs will do) and depression.  It hasn't really done anything for my RA, but it keeps my liver enzymes from climbing and gives me energy.

 

Also try physical methods, like heat or cold packs, soaking your hands and/or ROM exercises.

 

As a last resort, could you postpone for a semester, or even a year, while you get the disease under control again?

Definitely call your doctor ASAP and at least get a Medrol dosepak while deciding what to do about this flare!!!!

I've had good results from high-dose fish oil, targeting 3 grams/day of the omega-3 oils (10 regular capsules of fish oil).  Run it by your doctor first if you decide to try the higher dosage. Inner Glow,
thanks.. I guess I could do that with school.. It wouldnt be the end of the world.. but I was hoping to jump in.. have childcare all arranged. isnt that always the way life throws us things..

So a prescription hmm..ok   not Predisone.. made my heart pump and race.
do you think the NSAID prescription would do the same?
I amso skinny too. hard to keep weight on me and meds just do funny things to me.
I will try the fish oil in higher doses too Jasmine...
I am on the phone in am.. I am in sooo much pain!!!!!!!!
What is a Medrol pack?? Where do you find Same-e supplements?
I am so mad I went off the medicine now. I will try to get in to see PCP this week.

Hey Donna - A Medrol pack is a blister pack of prednisone (6 per day then 5 per day then 4 and so on), so if pred makes your heart race, that's probably not going to help. 

 

SAM-e supplements you can find usually in the vitamin aisle.  I use the NatureMade brand and although they're expensive, I use a lot of their supplements and they have a frequent buyer program that gives you coupons.

 

There are a lot of different prescription NSAIDs, so if one doesn't work for you or gives you side effects, you can try another.  I'm on Relafen, but there's also Voltaren, Mobic, Daypro, Clinoril, Lodine, Salsalte, Celebrex, and Vioxx.

 

BTW Donna, you say you have trouble keeping weight on you and meds do funny things...have you had your thyroid checked?  If there's a problem there, that might explain some things.

 

And I know postponing your program is the last thing you want to do, but always better late (and healthy) than (pushing yourself too hard and) never.  Hopefully just knowing you might have the option will take some of the stress off.

[QUOTE=Donna927]Inner Glow,
thanks.. I guess I could do that with school.. It wouldnt be the end of the world.. but I was hoping to jump in.. have childcare all arranged. isnt that always the way life throws us things..

So a prescription hmm..ok   not Predisone.. made my heart pump and race.
do you think the NSAID prescription would do the same?
I amso skinny too. hard to keep weight on me and meds just do funny things to me.
I will try the fish oil in higher doses too Jasmine...
I am on the phone in am.. I am in sooo much pain!!!!!!!!
What is a Medrol pack?? Where do you find Same-e supplements?
I am so mad I went off the medicine now. I will try to get in to see PCP this week.

[/QUOTE]

medrol dose-pak = 21 methylprednisolone 4mg tablets (synthetic steroid) on a punch card.  You take 6 the first day, then 5, then 4... etc until they're gone.  It is a quick way to get the inflammation subdued while you work out a long-term strategy.

SAM-E is available at most drug stores.

If so many things give you heart palpitations, you should really talk to your doctor about that if you haven't had it checked out.   I've got an annoying arrhythmia that I take metoprolol to control.  Naproxen and ibuprofen used to cause my heart to break-dance as well.  The metoprolol (a cheap, generically-available beta blocker) put a stop to all that nonsense.Inner Glow,
Thanks... my kids would love it.. I am just exhausted ll the time from the pain. I cant bear it any more. I just took tylenol arthritis and it isnt helping. I am having a hard time typing. This am I could barely butter my son's toast he had for breakfast.

I have to keep the attitiude....

I also dance..it helps.. my legs are fine... so far.... I can kick high and feet seem in good shape now.
elbows a little concerned about though and neck stiffness is really frightening me.

I am now making these power veggie breakfast drinks with my jacklalanejuicer.. and adding wheatgrass.
I have ginger tincture which seems to help me hands but digestion doesnt agree with it.
My thryoid was fine last time I was in about 6 months ago.
I make sure I eat.... :)
You are right. Medicine is necessary fast!
My RA also has a physicians assistant who i could see sooner.
I will be in the pcp office this week regardless. something has to be done.

Pip, The antibiotic might work but do they allow that... what happens if you get sick> are antibiotics able to work then> I know I had always felt better when I needed an antibiotic for something.

I fear I will catch all the colds... with meds.. so I have to get my immune system in best shape. My heart is also pretty sensitive... maybe I should see a cardiologist? lots of family history here

One thing I will not change.... attitude..

I wish I didnt have to giv up red wine. I like to have a glass of wine once a week.

Have you heard of remicade or Plaqueil?

I wont give up on school just yet... but thanks for making me see it wouldnt be the end of the world..
should i need to take a year off

I started plaquenil about 6 months ago.  The fish oil wasn't able to totally suppress the RA anymore, so we decided to try plaquenil.  It took a couple months to kick in, but it's working pretty good now!  My feet used to be my worst problem area, but now I have no pain or swelling even first thing in the morning!

The antibiotic protocol sounds interesting too, but again it's not a quick fix either from what I understand.  I've never tried Remicade or the other biologics, but many here have.

Get that heart thing checked out, woman!
Well, I just bought these beautiful notebooks for school..
darn it..
now I will use them to keep diary of my road to recovery.

Jasmine... is it a pill? the plaquenil or is it shot?
Have you had side effects,
are you able to have an occassional wine?
I do not smoke and i am not an alcoholi... I just hated when I was on the other meds... when they said you cant.. just made me feel like I was on super strict diet...

I know this heart place right around here...
darn I am not 40 yet...
I have 4 months before all this don't I.

I suppose I can look at it as what the heck. I want to be my best at 40
this isnt my best.

I will shake it off somehow:)   
the work we put into feeling good these days:)
geez
Plaquenil is an antimalarial drug which was found to relieve pain and inflammation in folks with RA.  It is cheap and comes in tablet form.  it's used for mild to moderate RA. I had some nausea when I first started taking it, but that went away.  I asked my rheumatologist about alcohol; it is not a problem at all with plaquenil.  I gotta have a couple of Sam Adams (beer) every week!!!!!my heart went all whacky (which I think is a perfectly normal response!!!).  Definitely get it checked out... they can treat/fix damn near anything. Donna - Donna, everyone here has given you excellent advice.  The important thing is you need the help of your doctor, rather than trying to do this all on your own.  When you took medications and developed the fast heart beat, did you talk to your doctor about the problem?  As Jasmine noted, there are medications which control arrhythmia and as Pip indicated, you really do need to have a thorough thyroid workup.  ok... I am so grateful.... I am calling dr. this am...

I am feeling better today which is nice

after I call dr.
then I am getting my hair done...
;)

I will keep you all posted.

Thanks.
Hi Donna, sorry you are having a rough time, i can sympathise on the hand issue as my hands, wrists and fingers are also painful. I was on enbrel too but i had a bad reaction so i came off of it. Have you tried Humira, I didnt have a reaction to that just sinus infections but a lot of people on here take it with no side effects or infections. I cant take a lot of meds due to severe reactions so I am not taking anything at the moment, I am waiting to try ritiximab but as im due to go for an op soon i cant start until after I have had it. It took me 9 long years to get a 4 year degree. RA had me cancelling classes on a regular basis. I made it through but near graduation I was so ill I could not make the classes and kept in touch online and on the phone. One course I flunked due to my daughter's illness at the time while I was battling my own illness..........as a single parent. SO it can be done, it just takes longer. wow..I got an appointment with RD this am at 11:30

wow

I will be taking all this with me today.

Thanks everybody

Pip thanks for the site
printing and it will help

thank youGreat news!!! Woo-hoo!! I got a steroid shot and blood work up, ppd

and being sceduled for orchinea? spelling
its the infusion once a month
I feel so much better now but it will last only few days
I think that's Orencia.  There are several people here taking it.

Woohoo!!!!
Donna, I'm taking my 4th dose of Orencia next week.  I hope it works really well for you and me both!

 

And now that we've got the RA stuff rolling, don't forget to make an appt to get the heart checked out.  There are a lot of effects on the heart from RA, and you don't want to take any chances with them.  Doesn't help to feel good from the Orencia if the ticker isn't working right!

Donna there is something I don't understand. You were in a remission with no meds for a year and now with your first flare you are going on Orencia which I thought is almost like a last resort drug for people who can't get relief from standard oral DMARDS or the other biologics like Enbrel and Humira.

 

Not that I know a whole heck of a lot- I've only had this crap for 6 months myself.

wanttobe RAfree,
enbrel closed up my throat.. I tried methrotrexate and avara... wont do them had allergic reaction..
I will do a 4 to 6 month treatment.. if it goes bad.. I will switch maybe to remicade.

I am making these immune drinks... I love them and I will be as healthy as I can...
I do not plan on being on this stuff forever.. I will probably switch but maybe this is what I need now...

I have had it for two years...
It will not keep me from life and love.

I am going to take the meds.. and keep focused with my goals of kids, family and school.

Believe me.. If it doesnt work, I will change fast/

Thanks for your concern

Aha- that makes sense now. Best of luck to you!Donna, what "immune drinks" are you taking? Good Luck, Donna.

 

I just read your whole story.. cheering when you got an appointment.

 

I wish you the best!!

 

and yes.. what Jasmine said.. what Immune drinks?

I make my own health drinks with veggies(organic and washed) and fruits.
I have one of those jacklalane juicer things... After, I add things to the juice like wheatgrass...and I am sure I could add to it. Have any suggestions?
It makes this pulp and I put that on a salmon salad.... or you can freeze it to and add to a smoothie
I know the foods that bother me... so I avoid them... eggplant and zucchini..
My kids love to make the drinks... we can make them different each time.
We always include a lime which flavors the whole yummy thing.
My brother in law has this vitamix thing which makes amazing drinks... a bit expensive but it works so good.

If I am going to take the meds... I have to be as healthy going in .. and keep to it.
It is a pain sometimes but it helps.... it is what the body needs... I know it so I have to do it!
My kids will get educated instead of depressed with my illness.
I dont want to feel sorry for myself because I want them to see a strong mom fighting it.
I hope the meds help and allow me to eat more of the foods I love a little bit.
I tend to eat fish and omlets (with egg whites) alot... and lots of water
I have a treadmill so I am trying to do a least 3 miles on it a day.. at least every other. I will work up to it.
My secret that I think brought me into remission before besides the meds I was on, was dancing....
Don't think I am a weirdo... the tango:) There is alot of people who find it helps with alot of stress.
I am the type of person who holds my stress in and I did so for a while. I have a beautiful family but
by allowing myself to cry over things I held in tight and to do something I loved, it helped. Ironically,
I went to school and over the last 4 months I barely danced. I am going to start my classes again soon.
I know alot of people think that this is silly or kindof rebellish but it works for me.
So besides the meds which I still am really selecting... I havent taken anything yet except a shot today...
I will try to be strict with the diet and relax. I am really scared but I want to feel better and live a happy life...

Wow.. compared to the agony I was in last night, I am so amazed how I feel. whatever she gave me...
it is amazing. but short lived I know...
but at least for this one night... I feel great!

Cherish the day, cherish the night, every moment is a special gift!


Innerglow,
Can you explain more of your experience with the Orencia medicine?
I hope it works for you...and me
Have you have side effects or gotten sick?
Any change in the RA?
Is it expensive/ I dont know if our insurance will cover.

I am calling the heart dr. tomorrow:)

Thanks.

Good luck to you Donna - I'm so glad you are getting treatment, so that you can prevent joint damage.  I hope Orencia is your answer! [QUOTE=Donna927]Innerglow,


I am calling the heart dr. tomorrow:)

[/QUOTE]

Excellent!  Like I said, it's probably some minor issue, but even if it's not, they can fix damn near anything these days with drugs, surgery, and/or cardiac catheterization.  Better to find out about a problem before it kicks your butt... my husband had a heart attack at age 44, so I'm a bit extra-paranoid about cardiac stuff.Maybe I should start Avara this week. and do this with Remicade?

I am sore again this am...
I am scared of orencia...
I am scared period.

the avara helped me before... I just hate losing my hair..

Is HUMARIA the same thing as Enbrel?

isnt it funny how when we feel good... it seems easy to stay so positive.
dang it,

I need to pick something


Pick AP!

 

Hugs,

 

Pip

Has your RD suggested Rituxan? It has worked very well for me. I've had no significant side effects and I have been able to drop both MTX and prednisone.

Humira is different than Remicade.  They are both TNF blockers, but they are different meds.  I'm not sure I know much about the difference between the two.  Orencia is a T-cell modulator, so it works in a different way.  Rituxan works yet another way, depleting CD20 B-cells.

So far I have had no reactions from the Orencia, just a little nausea for the first week...but I'm not sure that wasn't from other things.  The infusions are relatively short, like 30-45 minutes, versus 4+ hours for Rituxan.  The cost is expensive, but apparently the mfr has a program to reimburse your co-pays in the beginning at least (still finding out about that).  Also, I get my infusions from a home infusion service that sends a nurse to my home...less expensive (and more convenient) than going to the infusion center at my local hospital.

 

I can't say that I've seen any real improvement yet, but I'm hoping it's just a matter of time.

Yes, the Rituxan infusions are longer, but you only do it twice a year. Or in my case, it has been almost a year since my last infusion and I'm not planning on doing another one until late July, early August.

For me, it was one of the reasons that I choose Rituxan. I viewed that as a major benefit. I want to spend the least amount of time possible at the RD's office.[QUOTE=Lynn49]Yes, the Rituxan infusions are longer, but you only do it twice a year. Or in my case, it has been almost a year since my last infusion and I'm not planning on doing another one until late July, early August.

For me, it was one of the reasons that I choose Rituxan. I viewed that as a major benefit. I want to spend the least amount of time possible at the RD's office.[/QUOTE]

 

Lynn, that's definitely true...I didn't mean to make it sound like Orencia was better than Rituxan, just different.  The Orencia seems a little less scary to me (I've taken both), and from what I hear, it tends to work more quickly (but obviously doesn't last as long so you need to take it monthly).

[QUOTE=InnerGlow] [QUOTE=Lynn49]Yes, the Rituxan infusions are longer, but you only do it twice a year. Or in my case, it has been almost a year since my last infusion and I'm not planning on doing another one until late July, early August. For me, it was one of the reasons that I choose Rituxan. I viewed that as a major benefit. I want to spend the least amount of time possible at the RD's office.[/QUOTE]

[/QUOTE]

Oh, I didn't think you did :) I just picked Rituxan because of the whole B-cell thing and because I didn't want to go to the Rd's office once a month. Orencia probably does work more quickly and that would be a big plus to a majority of people here.Lynn492008-05-28 10:36:29I know... I just got my hair done...
my hair dressor said she can order me nioxen treatments which are suppose to grow hair.
The avara did work before for me.

The Humaria is so much like Enbrel I am afraid to take.
I think I might start with the pill.
I am a whimp afterall:(

do u know about the nioxen for hair??
the hair thinning is reversible.. it stops when you stop the drug. maybe I could take it for a few months and use the treatments, good diet, etc... and if it gets bad stop and switch to something else.
I have little children .. I live almost an hour away from infusion center.
My grandmother on my mother side had breast cancer in her 40s. it would be my luck that I develop it.

I just called dr. and am having avara Rx faxed to pharmacy. It was cheap and I can look at it for a week...
or maybe I should do the infusions...
oh
my doctor said that the antiboitic treatments are not even close to what I need:(
I must be worse than I thought:(

I havent gotten through to the heart doctor et.. I have to take my kids to pediatrican..
I will call then in the am.

Hey Donna -

They all say that.  Lurk on www.roadback.org and see for yourself.  I was early onset severe and on a walker 4 months post diagnosis and had to use a wheelchair in the fifth month.  I found the antibiotic route from research by accident.  Saved my life.  I am now learning to double dutch jump rope because she wants me too.

 

Hugs,

 

Pip

Hi Donna,

Sorry you are in so much pain!  Everyone here is absolutely correct in that we don't get to go off meds because we go into remission.  For me here is what has worked....I take a slew of meds, the first of which is Methotrexate (you said you hate that one ...but it has really been good for me) which enables me to take Remicade every 8 wks.  Remi is effective for me...I get 300 ml by IV every 8 wks.  I also take Relafen for the pain & inflammation...those Medrol dose packs are wonderful for flares, which do happen now and then.  Sounds like you are in a flare as much as anything.  I also take lots of other meds, including Plaquenil which doesn't help some people but it does help me.  I also have Sjogren's which is dry eyes, mouth, etc. 

 

Good luck with nursing school!  My 24 yo daughter is nearing the end of an accelerated program and should be ready for licensure at the end of this year.  She has Crohn's (we are an autoimmune clan no doubt about that!...) but has high marks (3.75) in her grad program at Case.

 

Your attitude is amazing, Donna, which will take you far.  Get your RA under control and then go follow your dream to be a nurse.  Best of luck to you!

 

Molly Bee

Pip,
Oh My!!!!!
Thank you...
I live in Ithaca, NY.... I need to get the ball rolling here. I didnt see any NY drs? I can travel.. anywhere.. if this can help me...Cleveland? PA..can you help me in the direction. I am so overwhelmed PIp... but I am crying with hope that I can be helped without the Avara, or the Orienca...oh my gosh
can you walk me through how I go about finding a dr. and treating myself this way. i want to hug you!
Thank you. I just got home from the health store and my symptoms have improved so much today.. Could it be from the shot? or just a good day... I have been doing major health tatics
Pip, I am overwhelmed.. but it is no turning back for me.. This is the way I want to go.
I have three children. My youngest is almost 4.
Can you help me get started...
I cant take Naproxen, but I could take antibiotics if they give them to me.( I aways felt better when on them) I dont want to loose my hair. I have let it grown and it is somethig I am not ready to loose.
I eat Bromelain in Pineapple almost everyday.. (do you take a supplement), I got the milk thistle today but I have never used it? any side effects with that? I try to eat my potassium, a banana, after the Magnesium and the oregano , I am afraid I dont know what those other items you use.

Ok, Wow! Bless you Pip. You have given me hope.

I am in this big flare, I cant concentrate lately...
Can if your feeling up to it, walk me through the steps I need to take.
I want to feel better and play with my kids like that again. I want to dance.
I want to be healthy!
I am so grateful for you...


Thanks Molly Bee..
The road is long and hard, but we're going to get there:)

DonnaI'll here if you need me!  And the steps are rather simple - find an AP doc and start.  Two steps forward, one back until you can do all you used to. 

 

Donna, never give up hope.  We have to for the kids.  My baby was 5 when I was diagnosed and had nightmares because I was so sick so fast.  Now, she hardly remembers (thank God). 

 

Pip

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