side effects ?

By Jene Wednesday, July 08, 2009

Ok...today is Wednesday - I think?  I've been unemployed a little too long and the days are all running together Undecided.

It's become a little frustrating looking for a job....not knowing for sure what I'm capable of anymore....I know I type slower...and couldn't be a nanny for a baby...too many bottles/jars to open...so as I apply and bs my way through interviews...and drain our savings....

My body reacts to the stress that I can't seem to get out from under.....I hate that RA doesn't allow me to lie to myself anymore. 

I used to just "fake it 'til you make it" and got through whatever madness presented itself....not anymore.

So right now my head is so full of contradicting thoughts that I feel like my mind's going to explode.

I have to get a job so we aren't financially screwed.....but I don't know what I can do....

I know I have to eat better....better foods and more often....especially if I want to fight this holistically (sp?).....but that costs money...blah blah blah

I know I need to exercise regularly....but I'm scared to make this worse....I don't know how/where to start?

I'm seeing my chiro regularly and it helps...but can't afford the co pay for the first time this week and though he'd let me rack up a bill....I don't want to do that....

I know that I have to take some form of medicine at night or this crap will wake me in the night and be hell. I will have that raging fire feeling from my numb fingertips to my shoulder and that butcher knife scraping the side of my knee ....and I won't be able to move when I wake up....

So initally it was 50mg of diclofenac as needed....

then 75mg of diclofenac extended release, 1 two times aday and Plaquenil - don't know the dosage for that....never had any intention of taking it....

didn't notice much difference from the 2nd diclofenac other than my stomach going crazy and flu symptoms.....

Then new dr says this is Palendromic (?) onset in the process of becoming "full blown"

changes the med to Mobic and gives me three weeks to ponder methotrexate (sp?).....

because he knows my goal is to do this naturally until/unless it becomes inevitable to take the meds...

Three days into Mobic...the swelling is going down...I have knuckles and knee caps again.....can't remember when I last saw them....I'd blamed their disappearance on gaining weight- which contributed...but they really are still there.  I was starting to feel a little giddy....

thinking I can take the Mobic while I'm getting all the other stuff in place and combine the two plans until I feel well enough to drop the meds totally....

Then my stomach goes crazy....same as with the other med....but a little worse....I'm thinking I'll eat more yogurt and it'll be ok......then the cramping and my lower back starts to hurt....I should've seen the signs and known what was coming......next thing I know it's the bleeding (yes that kind of bleeding and it wasn't as traumatic as it could've been- I have issues like that off on on)......and I'm furious and frustrated and wondering just how freaking far into denial I really am?

7/ 9/09 12:14am

Hey, you are very good ranter.Cool  I have my moments, like today!  Then I was thinking, the only time I get on this site, is when I'm hurting and tired.   And that makes me feel a bit like a usesr, or whiner. only when it's convenient for me.  I don't want to whine when it's only       convenient.  I want  to read all your blogs, and posts even when i'm feeling fine.   I havent been, but I think that is a step that I'm going to take.  To at least get on and read post everyday.

I have to say, being off work was the BEST thing for me.   Now that I'm back, I'm going to look into getting shorter work days.

7/ 9/09 9:50am

Sorry to hear it's not going well. But glad you got it off your chest, right?

When my stomach does that from meds, I chew pink pepto tabs. Get generic at Walmart. Tell your dr. about side effects, but it doesn't necessarily mean you need to quit the med. My dr. told my that most people give up in a drug too soon before their body gets acclimated, when the side effects decrease.

 

Sorry it is so rough right now. Many of us are asking ourselves the same things you wrote about! I will message you on FB, too.

Cool Kelly aka RA Warrior

7/ 9/09 10:29am

Dear Jene,

 

I know wht u r going thru, been there, done tht !.

I just thought i will tell u a bit about holistic approaches and stuff.

My first treatment was homeo, then i switched 2 Ayurveda, then for 5 months i took methotextrate, plaquenil & folic acid. I had nagging pain in my right knee for years.

although i am gud at hiding my pain, this one kept increasing and got to an extent where i could no longer climb up and down the stairs. coming down really was hell.

at that time, i went to a rheumy and he very kindly injected a shot of steroid onto my knee after taking out two bowls of synovial fluid. my husband cudnt watch and started crying. however, it did wonders to my legs. ah, to walk again!!.

nw for holistic stuff - if u go to indian stores, u wud get a yellow powder called Turmeric. it is very good for ur stomach and is also good for RA.

Go off red meat. it increases inflammation. Try to low down ur sugar, stop drinking coffee. start drinking green tea. Go off Dairy products. drink goats milk and use goats cheese if u crave dairy. go nuts, eat almonds!, use pepper a lot. Ginger is a wonderful thing. slice up a ginger pc, put it in warm water and let it rest. add a bit of honey if u think its too spicy for u. drink that in the morning. it does magic to your digestion and keeps u refreshed, and moreover, is anti inflammatory.  these things wont cost u extra money, u jst need to swap. milk to goats milk, red meat to fish or even better become a vegetarian !, sugar to honey. these simple changes can ease ur discomfort.

 

for cooking turmeric, if u r marinating, u can add that and cook; if u r making curry, add it to the onions after they r transparent, i even put it in soup.

 

i hope u wil try this . Bless you!.

 

Love&peace

Roshni

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Lene Andersen, Health Guide
7/ 9/09 10:56am

Untreated RA can drive you into a severe depression. Being new to this disease can also drive you into serious depression. I would recommend counseling to help you adjust to having a chronic illness - if you can find somebody who specializes in cognitive therapy, this can be especially helpful. I've seen counselors on and off through my 40 years with this disease and a shrink I saw who did cognitive therapy was the most helpful, teaching me coping mechanisms that I still use (and I haven't had to go back to a counselor since I saw him).  But here's the thing... I appreciate your resistance to drugs, I can even understand your resistance to putting chemicals in your body. But without treating your illness, you risk permanent damage in your joints that will affect your ability level in the long run.  Mobic is an anti-inflammatory and offers  symptomatic relief, but it does not suppress your RA and that's what you need. Not taking DMARDs such as Paquinil of methotrexate puts your future at risk.  I understand your concerns about the side effects, but most people have very manageable side effects (I wrote a post about managing side effects last year and you can read that here). You may have to try a couple of different medications before you find one that works for you and you can do some research on the different kind of DMARDs that your doctor is suggesting to see which would work best for you. Plaquinil is pretty low down on the ladder of DMARDs and as long as you're monitored, usually pretty low on side effects as well.

 

Four years ago, when I had to consider the Biologics (and was resisting mightily), I realized that the question I have to ask myself is what is my life worth. What is it worth to me to be able to work? To love my friends and family and be part of their lives? To have a sense of humor? We each have to decide how much we are willing to do to get our lives back. (in case you're wondering, I started the Biologics and I got my life back. For me, the risk is worth it)

 

Although I am taking the "chemical" medications, I am also supplementing with alternative remedies - as you said, treating my disease holistically, but in my case, that involves taking what is useful from a number of different traditions, allopathic (Western) medicine included. My next post will be about alternative remedies and it will be published next week, so you can keep an eye out for that. Unfortunately, I am unaware of any alternative treatments that will pack is much of a punch as Western medicine.  That's not to say that they don't have a decided role to play to increase your overall health and to help you control your pain, but they won't suppress your RA.

 

Yes, you do need to exercise to keep your joints moving - not too long ago, we had a post about exercising with RA and you can read that here. You may also ask your rheumatologist for referral to a physiotherapist who can help you develop a routine of exercise that will get you moving while still protecting your joints. Oh, and one note. Many women who have RA find that things get worse during PMS - in addition to the regular  hormonal nonsense, PMS can increase your RA symptoms.

 

Venting is good. Carrying around feelings and suppressing them has a tendency to give you more pain. That's what communities like this are for - we know how you feel, we've been there, please continue to vent as often as you need. I'm sorry Michael Jackson's death has hit you this hard - I think there are many people in the world who feel the same way. He was very special to a lot of people.

 

7/10/09 8:33pm

This is where I come for understanding, for no one can truly understand unless he/she has RA.

Michael Jackson's memorial on Tuesday had me weeping on and off all day, even at work.  I spent the evening letting myself grieve because I know from experience that it is what I need to do to move on.  My RA symptoms were worse because that happens when I get upset (I think to most of us).  So...no, it wasn't silly.  Any more so than all of the crying fans when Elvis died. 

While it is wise to stay self-aware enough to reconize if you are clinically depressed, it is ok to feel down sometimes.  I think our culture tells us that it is unacceptable to feel sad.  Why on earth wouldn't we be sad at some of the challenges in life?  Throw RA on top of it all and it becomes impossible to deny your feelings.  I use about the same strategy when I feel down as when I grieve.  I journal, writing down all of my crazy thoughts.  Getting them out (venting) makes my outlook clearer. 

I've been on Plaquenil for 8 months and it has made a huge difference.  The diflenac also caused me major stomach issues and then another caused high bloodpressure.  I wasn't crazy abou taking ultracet as a pain reliever, but have learned that pain REALLY stresses me out. 

Take care of yourself.  You are very valuable.

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By Jene— Last Modified: 10/26/11, First Published: 07/08/09