Swelling with bony changes . . .

Y is where I had a greenstick fracture when I was 17.  Playing volleyball with a balloon at a friends birthday party.  I know, I know . . . it wasn't the balloon itself, but rather the 6'4" guy on the other side who felt the need to spike the balloon at me.  Anyway, the area has been thicker than the Left ring finger ever since.  It went from being a 6 3/4 ring size to 7 1/4.
If you look at X  it is swollen.  There is bony enlargement on the middle phalanges bone, just distal (towards the end of the of the finger) to the proximal phalangeal joint.

I am including links in this blog, like I do in most of my blogs, so as to help you understand the anatomy of your body.  This helps you communicate with your physicians (especially over the phone) with what parts of your body are problematic at that time.


This started about 3 weeks ago and it doesn't seem to be going away.

Caffeine and Methotrexate

I have been having stomach pain after my weekly dose for the last two weeks.  Last week, I attributed it to being on Augmentin at the same time.  This week, not so much.

I'm already on Prilosec, 40 mg daily.  I will be calling my rheumy tomorrow morning about this.

In the mean time I looked up additional side effects of food intake with methotrexate.

Apparently, consuming more than 180 milligrams of caffeine per day interferes with methotrexate. Patients who consume more than 180 miligrams per day "experienced significantly less improvement in morning stiffness and joint pain from baseline than patients with low caffeine intake (more than 120 mg/day)."   

I have been consuming more caffeine in recent weeks.  Which could explain my increased morning stiffness and joint pain.  I do know, that I will be carefully examining my caffeine intake and reducing it in the next few days.
Please check out this link, to assess your caffeine intake and see if you can help reduce your symptoms.

Homemade Toothpaste

I know I'm not the only one out there with sensitivity to SLS & SLFS (Sodium Lauryl Sulfate and Sodium Laureth Sulfate).
I have already cut them out of my haircare and am using the "No'Poo" Method
Simple Mom
Crunchy Betty

Unfortunately, I am not one of those "I thought I had oily hair and skin . . . .but then found out otherwise", but I knew that . . . my mom and dad both have oily skin . . . as does my brother . . . you see where I am going here.

Any who . . . I have been 'poo free for 6 weeks now.  I did have an initial surge of oil production, but it waned in 10 days.  For weeks three and four I could get away with washing every 4 days.  Now that I've settled in, it's every two to three.  As a "conditioner" I add a 50/50 blend of Apple Cider Vinegar/Organic Lemon Juice, adding 3 tsp to 3 cups of water.  My hair looks great!
My counselor (a guy) remarked on it and wrote down all of the nitty gritty (ha ha, the reason I even mentioned it to him is I had NOT rinsed properly and had leftover baking soda paste behind me ear . . . gritty! :)  )details . . . .

Ok, back on topic . . .

Tooth paste.  My mom had always used a blend of salt and baking soda.  Kept it in a little yellow Tupperware container on her bathroom counter.  She has always had amazing teeth.

I had to cut out a majority of commercial toothpastes due to SLS and SLFS.  So I figured I'd try this:
3 T. Organic Coconut Oil (melts at 76 degrees F)
3 (or more) T Baking Soda
1/4 tsp ground cloves (you can also substitute with 10 drops of peppermint essential oil; I was out, so I used cloves)

Coconut Oil is naturally antimicrobial.  As are cloves and peppermint oil . . .

I'll let you know how it works for me!

Grey hair . . .

Grey strands aren't new to me . . . I found my first three ten years ago . . .
However, until recently, their texture was smooth.

Now, I have wiry strands floating above my crown.  This morning after washing my hair, I went to tweeze my eyebrows and discovered a white eye brow hair!  I called my husband into the bathroom to show him the offending hair before I plucked it out.  He goes, "Maybe it is because you are on chemo?"

He doesn't like that I take MTX, but he understands that it is helping.  He always refers to it as "chemo".  He's scared and rightly so.  It's a serious drug.

I had a follow up with my rheumy on Wednesday.  It went really well.  On physical exam, my feet are still no better, but they were also the first place this disease hit.  Probably where the worst damage is.  She says my condition is stabilizing and feels we can stretch my next follow-up out another month.  So I don't have to go back until June. YAY!  I had a chemistry panel drawn before leaving the facility; I had a CBC a month ago.  They came back completely normal!  So my liver is handling everything well!  As are my kidneys.

Therefore, I guess it is worth giving up a few glasses of wine a week and gaining a few more unruly greys!
Aside: I did do a bit of research and apparently grey hair is a side effect of methotrexate. Boo!

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.