6 Differences between Rheumatoid Arthritis and Osteoarthritis

This is a Great link, meant to educate, clearly and concisely.
6 differences between Rheumatoid Arthritis and Osteoarthritis
Thank you Healthcentral.com and a fellow online support group member who shared this.

Traveling while on Immunosuppresants

A common misconception by those not affected by an autoimmune condition is that we have suppressed immune systems.  In fact, it is just the opposite, our immune systems are hyper-responsive.  After finally being diagnosed, I realized that I hadn't truly been "sick" (caught a cold, etc) in nearly two years.  The times that I thought I was sick were flares.  For me a flare causes the following symptoms: low grade fever (up to 99.5, I typically run 97.4 or so), vague right sided ear pain, flu-like (joint pain, exhaustion, etc).

The goal with treatment of an autoimmune condition is to suppress the immune system back down to normal levels.  Tamp it down, so it no longer views our body as a threat, but not to the point that it does not fight disease.  It is a delicate balance.

My husband has occupational/environmental AND exercise induced asthma.  To get him managed he has been on allergy shots for nearly two years and is almost to maintenance phase, he also takes a long acting inhaled corticosteroid and bronchodilator.   When we get sick, we often inhale the contagion (it can also be ingested or be transmitted by contact in mucous membranes) . . . a common side effect for asthmatics on these types of treatments is rapid onset of an upper respiratory infection that can quickly turn into pneumonia and/or bronchitis.

Why do I bring up asthma in an autoimmune blog?  I bring it up because, corticosteroids are immunosuppresants . . . 

One of our personal requirements for going on vacation is I need to be medically managed.  This reduces the chances of becoming sick while traveling.  We will probably avoid air travel because of the recirculation of contained air . . . not good for either of us.  This situation is hard enough for a healthy individual, let alone a person on immunosuppresants.
The article link I found via medlineplus.gov cites that methotrexate monotherapy does not interfere with the influenza vaccine, but has shown inhibition of response to the pneumonia vaccine.  It also does not cite methotrexate as an anti-metabolite (which it is, according to drugs.com and my handy-dandy pamphlet from the pharmacy) . . . Click on "article link" for full text.

Anyway, the short of it is, consult you rheumatologist prior to any travel, but especially with travel requiring anti-malarials, vaccines, etc.  If anything, your rheumatologist may possibly want you on a medrol dose-pak during travel to help ease symptoms . . .
Good luck and happy traveling!

Medical Marijuana

Do I use marijuana? No.  Would I use marijuana to help with my chronic pain? Yes, but only if it were legal.
There are many individuals, like myself, who have a lot to lose if they were to get caught using marijuana, even if it were for medical use, as the legislation stands at this moment.  We have given up so much to these diseases, we don't mind paying for it, even if it is moderately taxed because it means not only would we not have to worry about legal ramifications, we would feel better.

I feel that, like other mind altering medications and alcohol, there should be restrictions about coming to work or driving under its effects.  Common sense tells us, if we take Vicodin for pain, we shouldn't drive.  There are HUGE legal ramifications for driving under the influence of alcohol.  I feel that at DUI/DWI should be in place for any mind altering medication. 

Heck, most of the meds I take for my health state on the bottle: "Do not drive or operate heavy machinery until you know how this medication affects you."  The same should hold true for medical marijuana.

This year, Ohio has two potential issues for the ballot regarding the Compassionate Care Act.
Please read: 2 Groups push Medical Marijuana
Become informed.  Check what legislation is in effect in your state.  Do what you can to help make positive changes for others.
Check for a local NORML chapter near you. Ohio NORML
We are not looking for marijuana for recreational use, but instead, as medicine.  Up until 1941/1942, marijuana was legal by prescription in the United States.  It's been used as medicine for over 4000 years . . . .

Weather . . .Ugh

It's raining terribly!

These last few weeks, I've been feeling rather good . . . thanks to my new friend methotrexate . . . I guess it IS worth giving up a few glasses of wine a week.

So the last couple of days I have been feeling crappy.  Nothing other than the weather, has changed.

The semi-reprieve has been nice.  I think that this beast just wants to remind me that it is still there and I'm not done . . .

One can hope.  I will not give up and roll over.  I may not be back to where I was ten years ago, but I will continue on.  With a few modifications!

Yet another . . . .Methotrexate Injectable Update

APP Customer Service
1-888-386-1300
25 mg/mL; 10 mL vial; With Preservative (NDC 63323-0123-10) available.

Bedford Customer Service
1-800-562-4797
Bedford Laboratories has limited quantities available of methotrexate preservative-free 1 gram lyophilized powder for injection (NDC 55390-0143-01)

Hospira, Inc. Customer Service
1-877-946-7747
Product 25 mg/mL; 2 mL vial (NDC 61703-350-38): next delivery end February/early March.


Mylan Institutional
1-888-258-4199
Limited quantity of 2 ml vials (NDC 10139-0062-02) and 10 ml NDC 10139-0062-10) available for emergency drop ship orders.

 The above information has been copied and pasted from the FDA's Drug Shortage List (Updated 2/23/2012, per the site)
Due to increasing demands, because of limited availability from several manufacturers, there has been and increasing shortage of Methotrexate.
Hospira and Bedford Laboratories(aka Ben Venue) are working closely with the FDA to get production back on track.

I will continue to keep tabs on this . . . for all of our sakes.

Methotrexate Injectable Update

Here is a summary of the FDA's comments on the shortage of methotrexate.
Copied from: FDA Drug Shortage List
APP Customer Service 
1-888-386-1300
Product 25 mg/mL; 2 mL vial (NDC 63323-0123-02) discontinued.
 
Product 25 mg/mL; 10 mL vial (NDC 63323-0123-10) available.
Note: if you were receiving the 2 mL vials, you may need to have your doctor call in a prescription to the 10 mL vials.  This item does have preservatives.  It is in high demand because of limited supplies available from other manufacturers.

Bedford Laboratories aka Ben Venue
Bedford Customer Service 1-800-562-4797

Bedford Laboratories has multiple products affected by the suspension of manufacturing at Ben Venue in mid-November 2011. Availability of all products, including those not manufactured at Ben Venue, is updated as information changes on the Bedford Laboratories website

Bedford Laboratories has limited quantities available of methotrexate preservative-free 1 gram lyophilized powder for injection (NDC 55390-0143-01) and 250 mg/10 ml (NDC 55390-0034-10) with short expiry. Other presentations will not be available until capacity permits.


Hospira, Inc. 
Customer Service 1-877-946-7747 

25 mg/mL; 2 mL vial
With Preservative (NDC 61703-350-38):  next delivery February.

25 mg/mL; 40 mL vial;
Preservative Free (NDC 61703-408-41): next delivery March. 

Mylan Institutional
1-888-258-4199 
Limited quantity 25mg/ml; 2ml vial Preservative Free (NDC 10139-0062-02) available for emergency drop ship orders.

Limited quantity 25 mg/ml; 10ml vial Preservative Free  (NDC 10139-0062-10) available for emergency drop ship orders.

25 mg/ml; 40ml vial,Preservative Free (NDC 10139-0062-40) are planned to be available again in the coming weeks.

As additional product becomes available, it will continue to be allocated via drop ship orders. 

Hope this helps you source your medications if your pharmacy says something isn't available.
Note: a majority of the large vials of preservative free will more than likely go to Institutions for treatment of cancer.  

Hopefully, this will be over soon! 

Prepping for Day after MTX

So, in recent weeks, I have found myself not eating much (and when I do it is easy, not healthy stuff) on Sundays.  I take my methotrexate on Saturday evenings and am wiped out nearly all of Sunday.

Tonight, I am trying something new.  I am going to make a couple of sandwiches, cut up some fruit and make some iced tea.  All portioned out, so all I have to do is grab and go.  I am curious to see if I will feel better by eating a bit and drinking more.

I'll let you know how it works out. . .
Regardless, I am going to inquire about injectable versus tablet forms the next time I see my rheumy (in 3 weeks).

Methotrexate Injectable Shortage ~ Not just Preservative Free . . .

FDA Drug Shortage List
According to the update on the FDA's Drug Shortage List (updated on 2.16.12), it isn't just the preservative free that is in short supply.  Though the Preservative Free formula is in the shortest supply.

APP has discontinued production of their 2 mL vials of methotrexate (with preservative), thus leaving their 10 mL vials (with preservative; same concentration) in higher demand.  Hospira is continuing to make their 2 mL vials (25 mg/mL).  However, with the decrease in total quantity available, these are in short supply.  Hospira is expected to release more of the 2 mL vials before the end of the month.
Hospira's Customer Service line is: 1-877-946-7747
APP's Customer Service line is: 1-888-386-1300
They should be able to head you in the right direction, if your supply is running low.

Note: If you take more than 25 mg per week, you'd be better off trying to source the 10 mL vials.  Since they offer a total of 250mg of methotrexate per vial.  Since it contains preservative, there are multiple doses per vial.

Other drug shortages that may affect you:
The generic form of Zofran (Ondansetron) injectable and Volataren Gel are in short supply.

Methotrexate Injectable Update

This Just in:
Ben Venue Laboratories shipped out several lots of injectable this week!

Good News for many!
Have a great weekend folks!

Amitryptiline Conflict

Yesterday, I had a follow up with my chronic pain psychiatrist.
In December, my rheumatology fellow (former) changed my meds a bit.  I'd been on Cymbalta for 3 years, to treat nerve pain.  A result of brachial plexus trauma; actually, scar tissue around the nerves.

This doctor feels that I have secondary fibromyalgia.  Which I am not going to dispute.

The Amitryptiline helped with sleep, which, in turn, helped me deal with my pain better.
Something I know about is chronic pain.  I've been schooled in it, for three weeks day in, day out.  I've also been living with it for 9 years, in various forms.

I know if I sleep better, I feel better.  That doesn't mean it IS fibro.  Doesn't mean that it isn't either.

Fact, if someone dealing with an illness that leaves then in chronic pain for an extended amount of time (no one really knows how long) and a resulting lack of sleep predisposes one to developing fibromyalgia.

Anywho. I was nearly fired from my psychiatrist because I let this doctor-in-training mess with meds that were not prescribed by her.  Firstly, I know better.  Secondly, she should have known better, she's the one who graduated from medical school.  Not me.

Well, my psychiatrist wanted me to have these heart flutters that I have had, since starting Amitryptiline, evaluated.  She firmly expressed that it has a laundry list of side effects and that she would never have put me on it. 

Today, I followed up with my GP's office.   CBC, TSH, etc were pulled.  An ECG was run, it is normal.  Auscultation was unremarkable.
I have a call in to both my rheumy and my psychiatrist regard stopping Amitryptiline.

So, word to the wise: If a doctor isn't willing to contact another of your doctors and work as a team.  They aren't worth keeping on your medical team.  Autoimmune cases often require multiple doctors to treat everything properly. Autoimmune patients need those doctors to, at the very least, communicate.

Shortage on Methotrexate Preservative Free Injectable Update

I heard back from my friend at Ben Venue Laboratories.  While she cannot comment directly, she did say that they are working on ensuring that those who need it, get it.  They are working closely with the FDA to get things back up and running.
Aside: From what I have read online, Ben Venue halted production when their internal quality control caught a discrepancy.  I, for one, am grateful that they were the ones that caught any issue (whatever it may be) before the medication was released.
That is VERY commendable!

Responder's Guilt

I have been pondering this post for several days . . . .

I feel like the methotrexate (aka MTX, Rheumatrex, etc) is starting to work.  My stiffness isn't as severe in the morning. Though, it still lasts as long.  I am able to move from bed a little sooner in the morning.  Stairs are still rough at that point.  I have more energy. My naps are shorter and I am able to make it on 8 hours of sleep or less (that was the real indicator, I haven't woken up exhausted).  I've been able to conquer stairs more often at school!

Then I began to worry about starting a thread about it in my online support group.  Feeling guilty, since so many people are having a rough time of it lately.  However, we also have a lot of scared new members, who are looking for the light at the end of that tunnel.

It was then that I realized what I was feeling was something akin to "Survivor's guilt".  I decided as I was falling asleep last night that I would write about this.  Share this good news.  Give someone else hope.  In deciding to do so, I started to recall the idea of medication helping a foreign thought.  I didn't really believe, though I desperately wanted it,that I could get better.

So, if you are reading this, grasping at straws and looking for some sense amongst the fatigue and the pain, DO NOT GIVE UP!  There is hope, you will find the right combination of medications and you will feel better!  I didn't believe it when others told me how much better I would feel once I did find that "magic" combination of drugs (for me it is 2 DMARDs, Sulfasalazine & Methotrexate; Mobic, Amitryptiline and Flexeril. With the occasional Percoset, tramadol or voltaren gel) . . . I didn't want to get my hopes up!
I am telling you, GET YOUR HOPES UP!
Cheers!

Know someone Battling with medical bills?

I am looking for a few organizations to support.  Organizations that help folks like me.

Right now, my insurance covers nearly everything necessary to cope with and treat my condition.  In July it will change.  We will have to pay for 20% of outpatient treatments, our office visit co-pays will go up, our non-formulary prescriptions will sky rocket.  However, what we will end up paying is still a fraction of what some pay out of pocket.  

Rheumatoid Arthritis Guy's facebook status this morning put it best, "You know you have rheumatoid arthritis when your monthly medical expenses are greater than your rent/mortgage payment!"

I am a full time student and hubby's meager income is barely cutting it right now.  He's only staying with his employer until I graduate and get a job, so we can continue medical insurance.  All three of us on the plan use it to its fullest extent.  

My MTX seems to be showing glimmerings of hope . . . I have a little more energy.  Monday through Thursday I am less stiff in the morning and I haven't needed breakthrough pain meds since 10 days ago.  Even then, it was for my intercostal neuralgia.  This weekend will be treatment four.  I am still on a daily dose of Sulfasalazine (2500 mg) as well.  Thursdays are crazy busy for me and I pay for it on Friday mornings until at least noon.

ButYouDontLookSick.com Posted this this morning . . Raising Money for Medical Bills, Medication, Surgery, etc.  It is definitely a good place to start!

Please Leave comments about foundations and other non-profits that you are aware of!

Pleurisy?

I followed up with the rheumy yesterday. The rib pain had returned with a vengeance.
She does not feel, at this point, that it is shingles.

However, she feels that the lining of the left side of my thoracic cavity (pleura) is inflamed.  A condition called pleurisy.  There is a slight chance that it could be related to a fibromyalgia flare, which could be magnifying the pain sensations.  Although, since I am otherwise feeling ok, the latter is probably not the case.

So, we can add yet another affected connective tissue to the list.

We are hopeful that by continuing the immunosuppressants, my symptoms will continue to improve.

Intercostal Muscle spasms and neuralgia

Finally, after all day in pain, I had my husband take me to urgent care.  We are lucky that there is one within 10 minutes of our home that is open until 10pm on weekends. As our insurance will not cover what they do not consider to be emergencies at the ER.  We simply couldn't take that risk.

The doctor said I was suffering from Intercostal muscle spasms.  Which means that the muscles between my ribs are spasming.  In my case, she feels that it may be caused by one of two things.
A) The connective tissue between my ribs is still significantly inflamed and has caused them to spasm.
B) The spasming is a precursor to Intercostal neuralgia, cause by shingles.  Usually the pain and violent spasms show up before a rash.

I had the chicken pox at 9 months of age, so shingles is a possibility.  Also, MTX may have knocked down my immune system (indicated by feel pretty good all week) just enough for the virus to flare.  If that is the case, it is a double edged sword.

Medrol
Percocet
Flexeril
Moist heat

Wait and see if a rash appears. Follow up with my rheumy early this week.
*le sigh*

Last night was rough. Fortunately, when the meds kicked in, I was able to get some rest.

Costochondritis?

This morning, I went about my normal routine.
Made breakfast for hubby  and I, emptied dishwasher, reloaded it while breakfast was cooking.
Sat down to eat.  Twisted slightly to move a chemistry textbook that was digging into my knee.

Next thing I know I am doubled over with my ribs in excruciating pain. Any move makes it worse. Tears came instantly.  Cursing at the pain, I made my way to the bathroom to grab morning meds and pain meds.
I tried calling my rheumatologist via the Nurse on call, but they put me in touch with my PCP. Who said go to the ER.  So I called back and told them I specifically need to be in touch with my rheumatologist.

It took them a feel minutes to get her on the line, but the nurse got my doctor on the line and called me back.  She's calling in Medrol.  Hopefully, it will quiet down the costochondritis, if not I'm suppose to go to the ER. 

Normally, I can endure high levels of pain without uttering a sound.  This is so sharp and quick, I could not help, but cry out.

Valium has taken the edge off of the spasms, but barely so. As long as I sit still and keep pressure with an ice pack, don't breathe too deep, I can stand it.

I know that they are covering their asses telling me to go to the ER and that the pain is bad enough, I probably should. What are they going to do? Take Xrays and give me narcotics.  While I would welcome relief from the pain, I need to buy groceries.
Glucocorticoids are gonna have to do it.

Paraffin Bath Treatments . . .

This is something that many of us could do at home.
My mom has a paraffin spa/bath that she often turns on a couple hours before I come over.
I have never tried wrapping my hands, but you'd better believe that I will be trying this next time I visit my folks!

Women's Health Magazine Article

Thanks to Rheumatoid Arthritis Guy for posting this link today!
Educate, educate, educate! It will help other's become informed!


When Your Body Attacks - Women's Health Magazine

Filing for Disability~ "When You're not Sick Enough"

 This is a topic that comes up all too often in my online support group.
We don't look sick on the outside, so we must be fine.  Right?  Wrong!

Every step I have taken in the last two years has been directly 180 degrees away from filing for disability, even when I couldn't get out of bed to pee or take more pain meds.  Mentally, at this point, I just cannot even think about it.

That said, I completely support anyone who is filing because their bodies just cannot take it anymore. 

For me, I have to believe that the science of medicine will not fail me.  I have made it through years of status migranosis, only to have a six month break, before a car accident took everything away from me.  My career, my self esteem, my spark.  It was a dark and scary place.  I couldn't LET the pain win, but what I was really doing was not allowing myself to heal.  I would cry the whole way home, every night from work because driving was excruciating.  Had shoulder reconstruction, which only fixed 10% of the problem (an impingement) and was left with scar tissue surrounding a nerve plexus.  At which point I was told, this was as good as it gets.  We cannot help you any further.  Even though I knew better, I believed them.  So I quietly suffered for a few years, I was tired of fighting for recognition that I was in excruciating pain.  Finally, I was suffering from a flare in my neck that I couldn't manage on my own and sought help from my PCP.  This led to spine specialists and pain management.  The spine doc told me that he couldn't do much, so here is an Rx for Neurontin.  By dose three I was in the ER for anaphylaxis.  22 hours later, after the rescue meds wore off I was back in the ER via ambulance.  After which I was written off by the Spine Doc who sent me to a chronic pain program.  Who, while they successfully treated the nerve pain, refused to fully evaluate my musculoskeletal issues.  No one in this hospital system would treat me because of the doctor who had been in charge of my care at the program.  Apparently, he has a bit of a God complex, despite being a Psychiatrist who specialized in Chronic Pain and gets pissy when others treat his patients.

So another year went by and I finally switched hospital systems and sought treatment with a physical medicine doctor. First thing I told him was, I don't want narcotics.  I want to be evaluated, something is wrong.  He agreed.  I started Physical Therapy that focused on pain management and breaking up the scar tissue that was the root of the issue and had left me with Myofascial Syndrome.  I was also referred to an osteopath.  A year ago, the osteopath had just finished a session (this man is a miracle worker who needs to be cloned) on my spine.  He said, something isn't right, you should be feeling better.  We discussed my symptoms: Weight gain, Horrid Fatigue, Vague flu-like episodes, fevers, diffuse joint pain.  It had all come on gradually, while I'd been dealing with another slice of hell.  It had gotten to the point where I couldn't tell you where one pain ended and another began. I was at the bottom of a cauldron full of dark black goo.

He decided that I needed to be screened for autoimmune diseases.  My Sed Rate was 58, my CRP was 1.5, but my RF was only 8 and ANA, etc were negative.  He told me, your case isn't clear cut, but you need to see a rheumatologist.  You won't get better overnight, but there have been so many advances in rheumatologic medicine, you can be treated.

Three doctors later, I have a vague diagnosis and am in my second week of a chemotherapeutic drug called Methotrexate.

While most days I don't feel great and it is really hard to remember that I AM better than I was a year ago.  I can walk. My morning stiffness only lasts 1.5 to 2 hours vs 3 to 4.  I only need a 1 hour nap per day. Where before I could sleep 3 or 4 hours in the afternoon and still head to bed that night.
I still don't sleep through the night, pain wakes me up, but it IS better than it had been.

All of this came to mind after reading this article: When You're Not Sick Enough on But You Don't Look Sick

Someone in the comments section recommended the link below.  I recalled, from some of my darker times over a year a go, perusing this website.  Most Disability cases get refused the first time, especially when the person is filing without legal assistance. 

Allsup

THC for thought

I don't understand what legislators have against something that can potentially support so many, therapeutically, with fewer side effects.
Arthritis & Medical Marijuana

Most don't care if they have to pay taxes on it.  I know I don't.
It is a plant that actually enriches the soil.  Commercial Hemp (which is also illegal, despite the fact that it contains no THC. Simply because it puts off the same heat signature and cannot be differentiated from marijuana by DEA flight inspectors) is a completely usable product.  No waste.  Food, paper, fabric, etc.
The list goes on and on.

Who loses? Pharmaceutical companies and everyone who's pocket is lined by them.
Not the patient.

With my career, being a full time student who uses student loans, etc. I cannot justify using something that is illegal to treat myself.  However, I can hope that one day this silliness will pass and we will have relief.
This is available at Zazzle.com

Hmmm . . . in some states it is legal for chemo patients to be prescribed legally . . . . Just saying . . . . Cheers folks.
Just popped my second dose of Methotrexate. Mentally crossing my fingers, hoping that I don't feel horrible tomorrow.