Had rd appt today | Arthritis Information

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Can't say that I am happy about the way it went.  I brought in the usual list of symptoms and meds and the treatments the pain clinic (that she recommended) is doing.  She took more x-rays of my hands and although there is a LOT of soft tissue swelling, there hasn't been any increase in bone damage.

Basically, she says as far as the ra is concerned, there is nothing more she can do.  She says my symptoms are from the fibro, adrenal exhaustion, neuropathy and stress. 

I was crying hysterically and even asked her to put me in the hospital than so i can be not so stressed and get the help I need and she said she couldn't do that.

She did give me a shot in my wrist, I assume some sort of steroid.  She told me to stay at the 3.5mg of prednisone and not to decrease any farther.  She said if I am still as bad off in three months when I see her again, she would suggest I go back on the mtx.  She didn't want me to do that now because I was already on it for 4 months and it didn't help and according to my blood, things look good.  She said it sometimes helps with swelling but couldn't even say it would help me or not.

She said I should see this shrink she knows who deals with chronically ill patients.  I called the new shrink and left her a message asking her to call me.  I have no objections to it but all my problems just can not be from me being stressed.

She told me that most of my pain was probably fibro and she doesn't treat that but the pain clinic I am going to does.  She also agreed that fibro would not be causing the swelling I have or the ostiopenia that shows up in my x-rays.

As i was sobbing and begging her to do something, she said there really isn't anything else she can do.  She said she didn't think it was all in my head but that as far as the ra is concerned, it is under control.

Of course my hubby backed out at the last minute and did not go with me even though he promised he would.  I am supposed to call my internist to talk about my 301 cholesterol level and call a urologist to talk about my bladder pain.  I forget the big long word she used but I have read about it, its basically an inflammation of the bladder.  My eyes are flaring so she even got to see the redness from the uveitis and my hands and feet are good and swollen as well.  She just keeps saying its not from the ra.

I feel hopeless and alone.
micheleb39203.4040277778

Michele I am so sorry.  My rheumy also said that the RA/PA are under control based on x-rays and blood work and I said then why am I in so much pain and he answered that arthritis is very painful.  He also said that under control is not remission.  My PCP takes care of my pain control which helps but I live in a lot of pain every day.

So are you taking nothing for the RA?

 

Michele- I am really sorry to hear your appointment didnt go well. Your husband really has to see that you need his support on this, its important to you and your needs. Stress can cause so many things and i definetly see a difference in myself and the way i feel when i am stressed out. I think seeing a shrink is a good idea, they deal with chronic illness depression and if you get a good one then its a good step in realising a lot of things.

Take care and kick that hubbys butt

But clearly that's not going to address all the swelling you've got (and osteopenia...I'm not familliar with that). Can you get a second opinion?  Or have you already been down that road?  And are you taking anything for the fibro and neuropathy (NSAID, muscle relaxant, anti-neuropathy like Lyrica)?

Michele, you are very overwhelmed right now and you have every right to
be. First of all, what medications are you on right now? It is obvious to
me that you need to advocate for your own health care.   Maybe we can all
put our heads together, look at all your problems, make a plan that you
can take to your doctor to see if you can get each of your problems taken
care of. Unfortunately, our health care system works under catastrophic
circumstances with little to no emphasis on prevention. This is going to
take baby steps but each step will put you closer to restoring your health.
Your doctor tells you this is not all in your head as she is handing you the
name of a shrink to call. Did she happen to mention that some of your
symptoms could be side effects of some of the medications you are on?
Did she tell you that osteopenia is a side effect of chronic prednisone
use? Probably not. The more I read these stories, the less I want to be
treated by these pill happy snobby doctors who have never had an ounce
of pain in their lives. Michele, you need to develop a plan that will allow
you to somehow get off the pred before it destroys your bones. If you
develop full on osteoporosis, you are in for some serious trouble with
fractures and a life of severe chronic pain. I hate to be so blunt but this is
what happens with the use of prednisone. Please seek another opinion
about your adrenal exhaustion and see if there is a way to get off the
pred and get your adrenal system fixed. And please get your bladder
checked asap. This is important and may also be a result of medications.
Please keep me posted. I am worried about you.Thank you girls, this is a list of my medications and treatments I am doing at the moment.

AM pills daily
bc pill (continuous to avoid estrogen withdrawal migraines)
2 calcium pills
1 vit d pill
3.5 mg prednisone (started daily pred a year ago June, typical dose 5-7.5, have been on as high as 30 for a few weeks at a time)
water pill to help with swelling and blood pressure called spironolactone
nystatin to help with systemic yeast overgrowth
adrenal supplement
cymbalta 20 mg
miralax-have constipation from pain pills
folic acid 3mg daily
Oxycontin 20mg

PM pills
xanax 5mg
zanaflex 6mg (muscle relaxer)
previcid 30mg
ambien 20mg
dhea supplement
cymbalta 40mg (for a total of 60mg a day)
adrenal supplement (for a total of 4 ilss a day)
nystatin (for a total of 2 pills a day for the yeast)
Oxycontin 20mg

I also take ocyIR, its an immediate release of 5 mg of Oxycontin for break though pain

Humira once a week

I use lidoderm patch
compression socks and gloves
splints

I have had one IV infusion of vitamins and trace minerals, supposed to help the adrenal and fibro, will get them every 30 days.

I am doing acupuncture once a week
Massage therapy once a week

sts electrical stimulation once a week for an hour

My symptoms continue to be
muscle and joint pain with visible swelling
wrists, fingers, ankles, toes, knees, hips, jaw, chest, back and shoulders are the most affected joints
fatigue-extreme exhaustion
hair loss
excessive sweating
dizzy, light headed
ears rings
heart palpitations
sensitivity to light and sound
feels like I have the flu all the time
inability to cope with stress, even the smallest thing
major depression, have had suicidal thoughts
no sex drive at all
inability to concentrate and remember
bladder pain and leakage, some blood on urination
high cholesterol
no restorative sleep
can't even do the most minor task around the house
fast pulse

I asked the rheumy today about getting off the prednisone and she said that the low dose I am on right now, 3.5, should be ok for a while longer considering all the problems I am having.

I do have a regular shrink who I like a lot but haven't seen her since the summer.  Her office is far away and I am too tired to go after work and she doesn't have appts on the weekends.

I know I really need to stop working but we just can not afford it.  We would lose the house, couldn't pay our health insurance or any of the doctor bills.  I asked hubby about looking for a job last night and he said there just isn't anything available.  He is currently laid off and is working from home repairing and modifying pro-audio gear.  The economy just plain sucks right now.

has hypothyroidism been ruled out.  Your symptoms are pretty typical for that

I'm real sorry to hear what a difficult time you are having. It's a real shame that your husband couldn't find it in his busy schedule to support you today; sure does sound like you needed him today of all days.  I'm sorry to say that's shameful. Especially now that I see he doesn't even have a job. Sure does make me grateful for my precious husband. My husband would drop everything to be by my side if I needed him. If I was in your shape he'd insist on being with me when i say the doctor. Your husband should really be ashamed!

I hope that things will soon improve for you Michelle. Don't give up....brighter days are ahead.

Michele, I have a question. How do you feel today, compared to how you felt
when you were first diagnosed? Do you feel worse? or better?   Its hard to
know how many of your symptoms are from polypharmacy. I'm amazed you
are able to work at all. Have you asked your doctor to put you in the
hospital for a drug holiday? This is a legit reason for hospitalization. I have
a hard time believing you need all that and there has to be some interactions
going on. I'm going to go and look up all the side effects, interactions,
contraindications to all your meds in the PDR. It may take me a couple of
days but someone needs to look into this. The doctor sure isn't gonna take
the time. I'll get back to you when I get it all looked up. I gotta agree that's a lot of crap. I'll be interested to see your findings Lorster.

Michele,

Please hang on - you can get this under control.  You sound like I did at all my meetings with these docs - and I was lucky in that I had my husband there because all I could do is cry.

Hugs.

Pip

I printed out what you wrote for your meds and symptoms and going to sit down and look it over and like Lorster start looking up interactions etc.  and see what I can find.  Also going to look up symptoms and see if any of them are from taking all those meds.  Whew that is quite a list.  Gimme a little time.  Maybe Lorster and I can put our heads together and figure something out.  This is just utterly ridiculous that they can't figure this out.  I almost want to say it partly has to be these meds the have you on.  I'm almost wondering if a weaning and detoxing is in order for you.  Clean out your body from all these dang chemicals that keep getting put it into it.

I loves yas muchly Michelle.  I know you hear hang in there all the time, but please do.  Give me a few hours to research and look stuff over. 

Thank you girls.

Buckeye, my thyroid is normal and they did a more extensive blood test this time, don't remember exactly how it was more extensive but the pain doctor said it was.  Bothy my mom and maternal granny have thyroid issues.  Mine gets checked about every 6 months

Lovie, my hubby does work all day, or so he tells me!  He works from home.  He used to work for a small shop doing the same thing but they closed.  He than worked for the electrical workers union for about 8 months until he got laid off.  He gives me a "paycheck" each week of 0.  I know his business is a lot slower at the moment and he has acquired some debt along with the business but am just not up to really knowing too much about it at the moment.  I am really hurt by him after the awful things he said a couple of weeks ago and not going to my appts and such.  he is usually kind and generally helpful around the house but its come at a very high emotional price.

Lorster-when my symptoms first started a couple of years ago, I was trying to get pregnant and had already had a few miscarriages.  I was only on aspirin, pre natal vits and a very low dose of zoloft.  Than, we started the fertility treatments and things went down hill very fast.

I am about the same as before.  More parts hurt overall.  I have stopped plaquenil and stopped the prevacid for a few months but with the pain pills, they are tearing me up and I actually was getting found coming back up into my mouth and spitting up on my pillow at night so added the prevacid back in.  I was weaning down the steroids but told to stay at the 3.5 mg.  The cymbalta is relatively new, changed from zoloft a few months back.  The water pill and yeast med, the adrenal and dhea are also relatively new.  I started with enbrel and switched to humira last august.  I need the sleeping pills or I just don't sleep at all.  I am more than willing to cut out whatever I can as I also feel I am toxic from everything but just not sure what to cut out??  The fact that it all started when I was pretty much on nothing while trying to get pregnant indicates to me that my symptoms are not drug induced.  I am SURE I am suffering from some toxic side effects from everything but just not sure what to stop.

I see my regular internist, who I adore, next week Friday for the cholesterol thing.  I will talk to her some more about it and I really hope she doesn't want me to take yet another pill for that! Grammaskittles, do you want to take on the night meds and I'll look up the
day meds? If we get a comprehensive list, we can figure this out.

Michele, what is the name of the birth control pill and dose?
the dose of vit D? the name and dose of the water pill, the dose of
spirolactone, are you on nystatin swish and swallow? and what is the adrenal
med called? Let me know these things.

I hope I didn't insult you by saying that about your husband Michelle. I'm just so upset for you. After the argument you had with him last week I thought for sure he'd show his support by being there for you today. I'm sure my disappointment does not even come close to yours and I'm sorry if my comments added to any stress you are dealing with today.

Sounds as if he's pulling in a pretty good income despite his lay off. Be grateful for that. Sure could be a lot worse.

 


Well then if you have multiple doctors, it makes it more complicated. JCAHO
requires med reconsiliation lists be made on all patients entering the
hospital. It is a complete list of meds both prescription and over the
counter. It is a way for the doctor to know what all the patient is on. My
internal medicine clinic is owned by the hospital I work at so my Internist
had to make up a list for me this week and she gave me a copy. This way
the doctor cannot say that they were not aware of the meds you are on.
Also, when the patient is discharged, they are all on the same page as far as
what medications that patient is on.

Lorster...I went down the list and looked everything up lol.  But it will be interesting to compare notes.  I have everything in Word right now and going to give a brief summary here of what I found.  Otherwise this post will be very very long lol.  Ok here goes.

Well...after a little research and note taking and comparing this is what I feel is going on.  A lot of these meds that you are on Michele is causing a lot of your symptoms and masking what the real problem is that is going on.  Most like FM and RA.  Personally, I would get my butt off of most of what you are on and for sure change your anti depressant (the cymbalta) because it is obviously not working since you are having suicidal thoughts. 

The spironolactone and the xanax cause repressed sex drive.  The spironolactone is often used to treat severe male sexual disorders.  Not just as a steroid beta blocker.

 The oxycontin can cause excessive sweating, amnesia, ringing in the ears, painful urination, and blood in the urine.  It also may block what the muscle relaxers are supposed to do for you.  It can also interfere with what the xanax helps you with.

  Xanax causes repressed sex drive and can also interfere with your yeast infection medication.

 Zanaflex can cause unusual thoughts or behavior, painful urination, sweating, numbness, tingling, and affect birth control pills.  I didn’t see anything on what it does to birth control pills, but I would imagine lower the efficacy of them.

  Previcid is a real nasty med.  I just don’t like this one at all.  It can cause arthritis!!!  Also the overgrowth of yeast in the gastrointestinal tract!!!  HELLLOOOO!!!!!  Also tachycardia (rapid heartbeat), flu like symptoms, amnesia, sweating, retinal problems, dry eyes, not getting a restful sleep, sweating, and UTI. 

Ambien can cause repressed sex drive, headache, flu like symptoms, and once again tachycardia.

Maybe I wasn’t too far off that this is just too many chemicals floating around in your blood stream.  Heck how many of them cause the same kind of side effects?  The fertility treatments have to be tied into this somehow causing something in your immune system to go wonky.  Doing fertility treatments is a stressful time in life and there has been studies that say a stressful event in life and then getting some type of infection causes our immune systems to totally turn against us and viola the RA.  Then they start testing and doing this and doing that and saying maybe it is this or maybe it is that because the dang docs are so afraid of malpractice they do not want to dx wrong and before you know it, whammo, you are on so many meds you are more messed up than you were to begin with.  I really really think you need to start weaning off of some of this stuff they have you on.  It is making you more miserable than helping you.  And you are on meds that are possibly interacting with other ones.  What a mess!!!

Can this pain management doc do a detox?  And then start all over and get treated for RA only?  I swear Michele, you have the RA and fibro and think that is all.  All these meds…ugh…2 of them could be causing your suicidal thoughts!   And sheesh no wonder why you have no sex drive!!  Your meds are repressing it!! And not just one med either!!!  Personally, I feel these docs and their behavior towards you has contributed to you having to use xanax etc.  We gotta come up with something to get you better!  Some kind of plan of action to approach the docs with.

I have gotten into trouble with being on too many scripts at one time. The pharmacist said that none of them were contra indicated with each other but it was  an awful lot for some one who's weight is 115.(yup it was a while ago). I will never know for sure but I think paxil (anti depressant/anti anx mixed with 5mg of pred for 6 month flipped my lid.

I got off the pred and changed anti depressants and was not only sane again but actually felt happy sometimes. Sex life slowly came back - took more than a year.

I hope your internal med doc will help you get rid of some of this stuff.

michele get the results and ranges for all your thyroid tests and post them on one the thyroid boards.  About.com has a very active well informed hypo board.  So many people are told they are "normal" when their thyroid numbers are not optimized but just because the numbers are normal for the range they may not be the best for you.   There is some controversy over the TSH ranges so if you are at the high end you very well can by hypo and still test "normal"  Thyroid disease can be difficult to diagnose when you are not typical

Please go visit them and let them take a look.  It can't hurt

http://thyroid.about.com/

 

buckeye39203.722037037

Paxil is known to flip lids in people.  It is a hit and miss kind of thing.  Marian, you are great example of changing meds and getting off of something to feel better.  I hope that encourages Michele to do the same thing.

I am on a grip of meds but both docs checks for any interactions.  I had to be placed on a specific anti depressant (which I am no longer on thank goodness that is 1 med gone lol) so that it did not interfere with my hypertension meds which I really need or I am at stroke level.  Bleargh.  It just amazes me that docs keep shoving more and more meds into us and don't even think that they could mask the real problem or cause side effects that could be both medically and emotionally devastating to us. 

Just want to butt in and say don't stop taking Cymbalta suddenly.  Antidepressants should generally be tapered on and off, and your dr may want to replace with something else.  I know the general idea is to get off as many meds as possible, but stopping the Cymbalta and possibly increasing the suicidal thoughts would be a very bad thing.Michele, I'm still working on the list. When you see your internist next
week, please have a heart to heart chat and try to get off some of these
meds. Take the complete list of meds with you. Tell your doctor how you
feel and that you are on so much, you don't know if you are coming or
going. You must do this in baby steps and a good doctor will work with
you in a way that will allow you to reduce in a safe and reasonable
amount of time. Your body will not react very nicely if you do it too fast.
Listen to your doctor. If your doctor says you cannot go off these meds,
find a new doctor. I know some of the members here have possibly had
similar experiences as you. I hope they can share with you what they did
and how they did it. This is not a hopeless situation but I know you
probably feel that it is right now. I think as you come off some of the
meds, you will start to feel better and have more energy. The prednisone,
cymbalta, xanaflex, xanax, ambien, and oxycodone drugs will majorly
mess with your moods, sex drive, make you depressed, suicidal,
exhausted. Then you throw in the birth contol pills this and those can
affect the mood too. The prevacid, water pill, spirolactone and vitamin
supplements have a whole slew of side effects and I'm sure some
interactions. I'm not sure how your doctor sleeps at night knowing you
are on all these meds and as miserable as you have ever been in your life.
If more than one doctor is involved in these prescriptions, they are not
communicating very well. Please let me know what the water pill is so I
can look it up.   

She is on a grip of stuff she has to wean off of.   Can't stop a majority of these meds without weaning.  Especially ANY anti-depressant.  I still can't help but wonder if all these meds, their side effects, and their interactions together is causing all this. 

Hurry up Lorster!  LOL!!  No really dahlin take your time so we get the right info.

Night at all.  Heading to bed after watching Jarhead with Danny.  Very nice eye candy in that movie lol. 

My heart and prayers go out to Michele, I'm in the same boat as you are but it's the prescipts. that drive me out of my mind, especially when all I look at my husband as he shakes his head, he is blessed that he only takes l baby apsirin a day.  He sailed through prostrate, thankfully with no meds at all...Don't feel bad about your emotional health as it is becoming a more prominent problem which  the doctors must admit.  I've developed servere itching over my arms and top of my hand swelled right up on the top, given antibiotics, they shake their heads....but I am still off pred after 18 mos use now off since Jan. 2/07..........taking acupunture, massage therapy, tylenol arthritis, along with b/p meds, water pill, prozac, cholores. staten.  and the best is the Ativan that makes me more sane.   Hope you get some answers to pass on the the 100s of others suffering with this.

Again remembering you in my prayers, and the hubby must feel so helpless, mine does and he is my best friend/phsycartist (sP)  ..

rose

 

 

Ok girls, sorry to be mia yesterday, had a rotten day.  Thank you all so much for taking the time to help me sort through all this!

The bc pills I am on are Kireva??  Its an older one, its in the cheapest tier on my co pays!  Its a monophasic pill.  I was on bc pills for many years, like 15 years without any issues.  Since I am not having sex http://www.channel4.com/science/microsites/S/science/body/de pression.htmlWas the DHEA prescribed by a doc, and were you tested for your levels first?  If so, maybe it is time to be tested again. I know it is OTC, but believe it is a hormone, as is Vit. D.   Pat Have you tried something just OTC like Pepcid?My DHEA levels were checked about 6 weeks ago.  It was something like 32, the normal being something in the range of 175, forget up the upper limit was said to be.  The pain doc suggested I take one a day until we recheck my blood in a few months.  It is OTC.  And, yes it is a hormone.  It helps with sex drive as well, or so they say!

I haven't tried the otc antacids other than handfuls of Rolaids with the gas-x in them!  I am definitely going to ask the internist to change it to something less strong.

I am feeling a little bit better today.  Lets see if it holds.  Maybe all the treatments are starting to work.  The cortisone shot in my wrist made a huge difference!
I'm really sorry you are going through all of this. It's just not fair.

You are on an AWFUL lot of hormone type drugs. Spironolactone or aldalactone is hormone that suppresses male hormones in your body. But yet you are take DHEA which is male hormone. Prednisone is another hormone, as is Vitamin D. And the adrenal supplement is also another hormone. Girl, I'd get yourself to an endocrinologist. I realize you've said you've seen one already but you are on a cocktail that needs to be overseen by an endocrine doctor. And then to top it all off you are on birth control. Gesh, you really are on too much.

I think your body really is toxic as Lorster and Grammaskittles have said and toxic from hormones is really messy. Hormones don't leave your body like drugs do. They have very long half lifes and your body takes along time to readjust.

Michele - so sorry to read what you are going through.
A lot of it is familiar to me esp re husbands and side effects from drugs.   You are getting so much good advice from the others here, the only thing I can add is degycerised (SP)licorice is meant to be good for adrenals
(think it is okay with high blood pressure but check with an expert first). Having visited a friend in hospital yesterday who has been there 2 weeks, these days they kick you out in a day usually, but it seems side effects from her drugs are causing the probs but they are still looking for the cause, they think it is from medication. Lorster knows her stuff when it comes to medications and toxicity as do a lot of the others so do your best to remove as many toxic drugs from your system as possible. With the pain of RA it is so difficult but keep trying to lessen your drug intake,
I am sure you will eventually. The sleepiing pills I have been taking for 6 years have caused more psychological probs. than anything but they need to be withdrawn so slowly, some anti d's can also cause more probs than they solve.   I left my husband because amongst other things he was hopeless with my RA but you have to think that one through carefully as it is hard on your own.   Counselling or psychiatry initially will give you a good support network - if you dont find a good one change over until you do. Then assess the situation and problems you are having with your husband and make a decision when you are less stressed and feeling better with your RA.   Remember things will sort themselves out eventually, the pain often goes away or lessens and this board is a strong support base for you.
There is always someone here to listen.
My thoughts will be with you and I feel so sorry for the rough time you are having but it will pass, try and keep that in your mind. I find it helps.
Kind wishes,

Michele, I'm so sorry to hear that you're going through a rough patch.  You're on quite a mixture of meds so it's not surprising that there might be some adverse reactions. I certainly know what that's like. I'm taking Gabapentin for neuropathic pain and with the various other meds I'm on something was making me feel dizzy, disoriented, and really exhausted every day. It turns out that Relafen, an anti-inflammatory I was taking for RA, exacerbated the side effects of the Gabapentin. I'm glad that Gramma and Lorster are checking out your meds. You'll be armed with solid info to share with your drs. Hopefully you can whittle down that list and only be taking what you need to deal with the RA and Fibro pain.

You asked if there's anything to take other than Prevacid. I'm taking Pantaloc for Acid Relfux. It works well for me... my usual dose is 1/day. Sometimes if I've had too much caffeine or gassy foods, I'll need a second dose.

Wishing you all the best

Punkie


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