Methotrexate RECALL

"Sandoz Inc. announced on October 26, 2010 that it is initiating a voluntary recall in the US of all 50mg/2mL and 250mg/10mL vials of Sandoz and Parenta brand Methotrexate Injection, USP product (“methotrexate”) to the consumer/user level. Consistent with its commitment to quality and patient safety, Sandoz is initiating this voluntary recall of all 24 lots of the affected product following the finding of small glass flakes by Sandoz quality control in a limited number of vials and lots."

For more information, click here.

Injectible

My husband gave me my first injection of Methotrexate last night. The needle was quite a big larger than we expected (we are used to diabetic pen-needles we use for our daughter) but it needed to be because .8 cc is A LOT for one shot.  My husband was gentle, and the insertion of the needle wasn't bad at all, but the more he injected, the more it hurt.  By the time he had it all in, I have to say my bottom hurt!! (We opted for the fattiest part of me since the needle was bigger than expected. I'd hoped to do it in my arm, but I don't think that's going to happen, at least for a while.) Fortunately, it went away within minutes.  All in all, it was MUCH better than swallowing all of those pills. I noticed a new warning on the injectible that hadn't been on the oral med: May Cause Dizziness.  I stayed put while the soreness wore off, so I didn't experience that feeling - I suspect the dizziness could be from the volume of the med.  We use a numbing cream before we set my daughter's insulin pump, so next week I'm going to use a dab of that first to see if it makes a difference in the soreness of the injection.  Today I feel like I do on most Thursdays, better than the rest of the week. I am hoping the effect of the injection doesn't wear off as quickly as the oral med does.

I ordered my meds online for the first time, using a website called Health Warehouse. It was MUCH less expensive than any of the local pharmacies, and despite a few snags with getting the prescriptions transferred and verified, they sent my order overnight so I wouldn't miss a dose (or have to fill it locally for the week). I'm pleased and look forward to saving money using the online pharmacy.  I do have some measure of guilt over switching from my local small pharmacy we've used for a decade, but when you have no insurance, your kids have no insurance, and one of your family members is Type 1 Diabetic and one has RA, and the price difference for the same meds is so large ... well, I had to do what I had to do.

B Cells, Meds and More

My most recent visit to Dr. Z revealed what I had suspected ... I was getting Okra. I don't know the dose, but since my B cell count is still low I continue to be followed by the researchers. We'll see what the recent labs show, and how long that will continue.  I also discussed with Dr. Z my increasing gag reflex when I take the MTX every week, and what appears to be a diminished effect (stiffness has been returning a few days before dosing day instead of just a day before). She offered to increase the dose by a pill, which I declined (I am having some serious issues swallowing the little buggers, and I know it's mental). Before my daughter was diagnosed (November 2009) with diabetes, I'd have never dreamed I'd ask about injectible meds. Alas, Dr. Z says the injectible MTX is more effective with less side effects. Sign me up! So, I have another week of pills, then I'm cashing in my new prescription for vials, needles and syringes.  If my 5 year old can endure 1000 shots in just over 6 months, certainly I can endure one a week!

About prescriptions ... since I'm now getting Social Security Disability (but not Medicare yet, waiting period), my children have been terminated from SoonerCare coverage. This has left me scrambling for alternatives to the outrageous costs of cash-pay medical expenses.  (An interesting note, the insurance company was paying $12 for my MTX. Cash pay at the same pharmacy for the same prescription was $40.  So, the next person who wants to argue with me that health care doesn't need reforming, LOOK OUT!)  I've discovered several resources I am happy to share.  First, NeedyMeds.org ... this is a GREAT resource - you can search meds by their name or by the disease they treat. There are lots of programs here.  Next, HealthWarehouse.com ... hello, savings! And, if you call them to order a new Rx or a transfered Rx, mention "First Month Free For Me" and your first month of generic prescriptions is FREE! And, if you "Like" them on Facebook, you get a discount code for a $50 non-prescription order.

As for how I'm doing with my disease ... still no cure. The rain continues to flare it. My fingers continue to morph into useless ugly appendages. My joints still lock up (I couldn't bend one of my toes for a couple of days during the last rainy session we had). Some days I limp because my foot or my knee aches. My typing accuracy is a CHALLENGE.  However, the sun still shines, my children still giggle, my husband still loves me, and I am still here to enjoy it, so I keep movin'.

Labeled

It's official. I've been labeled ... physically disabled. I'm not sure how I feel about it. There's a part of me, somewhere deep inside, beyond my gnarled outer self, a part that is pissed about it, defeated. However, when it's Tuesday morning and it's clear to me that the MTX I took the Wednesday before has done all it can and I have two full days still to get through before I take the next dose, and I know I can't afford to take any other RA prescriptions, I ... am ... disabled, undoubtedly. I am skeptically optimistic that this label and all that goes with it will, indeed, be the relief I need.

SS/Disability Progress Update

Thought I'd share a quick update on the SS/disability progress. Pretty slow going, but STILL GOING and that's what's important. My dear Dr. Z had very little in the way of records to share since most of my treatment has been at the whim of a foreign drug research firm. This presented the SS office with difficulty in making a determination, so they set up an appointment for me to see a doctor at their expense. I wouldn't have a problem with this except for three little things - 1) it's over an hour's drive away, 2) I have a Type 1 diabetic child who would not be allowed to accompany me, and 3) they couldn't see me until the end of February. The social worker assigned to my case seems sympathetic to my issues but her hands are tied by a fair amount of red tape. However, she mailed me a couple of "Third Party Function Reports" which I had my husband and sister complete, and she also requested photos of my hands. It took me some time to get all that completed and together, and she should have that stuff back by the end of this week. She has also sent more specific questionnaires to Dr. Z, which have been completed and returned. I do believe she's trying to have a determination made before the scheduled appointment. It was interesting to read the answers of my loved ones, and my husband's brutally honest answers made me aware that perhaps I've been a bit modest about my disabilities. Here are the photos my daughter took of my hands - these are a couple of the ones I'm sending in.

 

lying "flat"

at rest

 

grasping/fist