Q:Hi, can you ask your followers what kind of side effects they have had with methotrexate. I am on 25mg per week, and am experiencing so much hair loss. My doctor doesn't want me to go off, but I can't emotionally take this anymore. The methotrexate is really helping me so this is a devastating decision.
This side effect is common for many MTX patients, though I know how devastating it is to lose any amount of hair. Are you taking folic acid with your shots/pills?
What does your doctor say about switching to another DMARD, like Arava or CellCept?
I had a particularly difficult day emotionally, mentally, and physically.
I haven’t been sleeping well (was waiting for my prescription to come from my mail order pharmacy) which just breeds a cycle of anxiety. I’ve got so much going on with fall semester, moving into a new apartment, the cost of physical therapy and some of the other treatment options I’d like to try, just a lot buzzing around in my brain.
Between that, the addition of Methotrexate, and a high pain level, it all caught up with me today. I even skipped my run/walk.
But, today is done and hopefully, tomorrow will be kinder.
Enjoy this music. The Dodo’s are excellent. Take a moment. Breathe. Relax.
Update: More Methotrexate, Kineret, Still’s Disease, TRAPS, and all things Running with Arthritis
I feel like it’s been a long while since I updated you guys on my own personal health situation.
Recently, I saw an immunologist for another opinion (at the request of my other doctors) on my genetic autoinflammatory mystery disease.
The consensus was basically: yes, I have a rare disease of the immune system, similar to TRAPS. There is also thought that it could be TRAPS, but that it’s a new mutation not documented for the disease before. No, it’s not PAPAS (Pyogenic Arthritis, Pyoderma Gangrenosum, and Acne Syndrome). No, it’s too rare to speculate about prognosis or progression.
Both this immunologist (who we will call Dr. K) and my rheumatologist agree: I’ve hit a plateau with Kineret. Kineret has resolved the inflammation around my spleen, my cyclical fevers, my red facial rash, and my GI inflammation. However, my jaw, chest, hips, hands, and ankles are still inflamed. I still have a very distinct Still’s rash on my arms, photosensitivity, heat sensitivity, nerve involvement, fatigue.
It appears as though I have a disease of both the innate and the adaptive immune system, it’s tricky to find a biologic that will put both into remission.
If I still have to use pain medication, I’m not satisfied. And I’m still using pain medication. The long term goal is to not have to rely on oxycodone to function without a 6 on the pain scale.
So, we added Methotrexate back in the picture over Cellcept. Will monitor liver function…which just keeps on rising with the damn biologics. I swear if I end up with some level of fibrosis 20 years from now, I will not be a happy camper.
If in two months the Methotrexate does not give that added oomph to squash the inflammation, we will stop the Kineret and try something new, likely Actemra.
So I’m frustrated. I feel like the odds are against me because I have dysfunction on both ends of the immune system. There was discussion about combining two biologics, but the risk of cancer increases significantly with that protocol.
The other idea Dr. K threw out at me (along with encouragement to “keep an open mind”) was autologous stem cell transplant.
I’m sure as hell not ready to go there yet; there are still options less intense.
My rheumatologist also insisted that I stop running. I’m not going to give it up, but I am going to take it a little bit easier. One light run a week and four days of speed walking instead of 3 runs/week.
I also saw a pain specialist yesterday. But that deserves its own post.
So that’s where I’m at. Lots of changes, lots of ‘what-if’s’. Some good, some not-so-good. I have my fingers crossed that Methotrexate gives my immune system a much-needed push.
Q:Hi! I have a quick question- I can't drink because of meds and my friends are all BIG drinkers. If I go to the pub with them or to a house party they still try and encourage me to drink, and friends of friends who don't know my situation do as well. I was wondering how other people cope with this? Saying "I don't drink" tends to trigger a lot of questions and I'd rather forget about things for a night than tell a stranger my life story! Thanks! (I don't mind this being published :) )
Instead of saying you don’t drink, can you simply say “no thank you” and leave it at that? Or, just say the alcohol conflicts with a medication you are on and then quickly change the subject. Or use the opportunity to educate someone about your chronic illness. I doubt you will be able to avoid pesky questions— a 20 year old that does not drink is (at least in a university town) not overwhelmingly common— but you can always direct the flow of conversation.
When I was the only sober person around my not so sober friends I realized that I was surrounding myself with the wrong people. Not because they liked to party, but because they did not respect my limitations. Like you, they pressured me to drink. I actually had one friend make my favourite drink and put it in my face (needless to say, we don’t hang out much anymore) despite my group of friends knowing I was on Methotrexate injections.
If you have explicitly laid out to your friends why you cannot drink, the consequences of you doing so, and asked them for their support, and they still encourage you/pressure you, perhaps it is time to evaluate the people in your life. For me, it meant not partying around or with certain people, avoiding certain situations, and then it came down to not being friends with some people at all (the drinking pressure was just one of a few reasons that contributed to this).
Ultimately you are responsible for what goes into your body and who you spend your time with, so surrounding yourself with healthy, positive, and supportive people is key. Sometimes that means creating boundaries with people that are not easy to establish, but your mental and physical well-being needs to come first. Any “friend” that does not understand or help you in that might not be the greatest influence, especially in a social setting.
Q:What do you use to keep your nails from splitting or peeling? Mine are so bad since starting MTX and becoming vitamin deficient. Any advice?
My nails are a mess lately. I take a lot of supplements (D, B12, biotin, multivitamin, fish oil) so talk to your doctor and see what they recommend for combating your deficiency.
I use a nail strengthener called REBUILD from Seche Vite as a base coat under my nail polish, along with a top coat from the same brand. Both have done wonders for me and actually work. You can find them both here in the Chronic Curve store. The top coat is super thick, glossy, and keeps my nails from chipping and peeling for at least a week before I have to repaint and use the strengthener again.
Definitely try those out and see how they work :) If you order through my Amazon store (linked above), I get a small commission and would be very grateful to you :)
The Human Pin Cushion: Tips for Making Self Injections Easier
No one likes having to do weekly (or daily) injections. Some hurt, some sting, some smell, some make us sick, and all make us uncomfortable to some degree, but I’ve picked up a handful of tips over the past eight months that I hope those of you just starting injection therapy might find useful.
- Do you struggle using your hands to hold a syringe or vial? Talk to your doctor andpharmacist about alternative options for syringe types and vial sizes.
- Always have someone else watch and learn how to administer your injection, just in case you for whatever reason are unable to do so yourself.
- Before you inject yourself, practice on a plum. I am completely serious. Ask your doctor for an extra syringe, take it home, and practice darting the needle into the plum. The consistency is much like your own thigh, arm, and stomach, and will ease a bit of the nerves prior to your fist injection. Do it as many times as it takes to feel confident in your darting abilities, then move onto the real deal. Ask the close friend or loved one you want to learn how to do injections to practice with you.
- Use water to get an idea of how much medication you’ll be drawing up into the vial. Get comfortable with the tools.
- Create a clean set up with a band aid, alcohol swabs, a sharps container, all of your materials, and make sure your hands are thoroughly washed. After hand washing, use hand sanitizer for extra measure (tip from a nurse).
- After cleaning the injection area properly, allow the alcohol to air dry before you inject. This will minimize burning from the alcohol going into your skin with the needle.
- DO NOT blow on the area to make it dry. This defeats the entire purpose of cleaning it with an alcohol swab
- Have someone with you for your first injection, especially if you know needles make you feel even the slightest bit queasy or dizzy.
- Reward yourself after you complete the injection(s). You deserve it.
- If you are sensitive to preservatives, do nothesitate to ask your physician and pharmacist about preservative free medication. The set-up process may be different, but the option is out there.
Specific to Auto-Injector Use:
- DO numb the area with ice if you feel the need. There are also prescription creams available to help numb the injection area.
- If you find the speed of the auto-injector or preservative to be painful, DO count the seconds out loud, perhaps yell them, while the injection is taking place. Focusing on something specific, like the seconds until you hear the click of the pen, helps if you find the injection to be painful.
Specific to Refigerated Medication:
- If directed to let the medication come to room temperature prior to injection, roll the syringe or auto-injector in your hands. This will warm it faster and more efficiently.
- When taking Enbrel, I let the auto-injector pen sit out 15 minutes longer than instructed per advice of an Enbrel assistance nurse. It made a difference, so don’t be afraid to call up your pharmacy and ask for advice!
- RELAX. If your muscle is tense during the injection, you will find it more painful. Use deep breathing exercises, visualization, and relaxation techniques to help your body relax. Imagine your actual muscle in a relaxed state.
- Calm music or a quiet environment is key if you are nervous or tense. Ask any distracting loved ones to leave the room or go into a secluded area.
What are some tips you would give to others just starting a new injection therapy?
update of information
on the Methotrexate Shortage post. The NY Times has also issued a relevant report.
United States Methotrexate Shortage
According to this ABC News report, a critical shortage of the “children’s Cancer drug” Methotrexate is apparent. Though ABC news mentions the 3,000+ children with cancer that need this drug, they fail to mention the 300,000+ children with autoimmune arthritis (RA, Lupus, etc) that may or may not rely on the drug, not to mention the thousands of adults that do so as well.
Once again, Autoimmune Arthritis is not even on the radar. So send ABC news a message or comment letting them know that this shortage will affect the lives of many more individuals than they are reporting.
This is much more than an “oncology crisis.”
EDIT: The NY Times has also issued this relevant news report, but again, they missed the fact that there are thousands that use this drug for Autoimmune diseases. Thousands more than Leukemia patients. Neither of which should have to suffer. Write them a comment or complaint and let them know why this is more than an oncology crisis.
EDIT: I somehow missed that they noted Rheumatoid Arthritis in the article. Complete fail, but Rheumatoid Arthritis is just one of many autoimmune arthritis conditions…
Weekly Link Roundup 12/28/2011
- Scoliosis Links— A massive database of all resources scoliosis, from Flatback Revision surgery forums to resources to help you find a surgeon or a specialist. If you’re looking for resources and information before making treatment decisions, it’s worth checking out.
- Renal Stones (Kidney Stones) in Patients with Rheumatoid Arthritis— A study that found a high(er) occurrence of kidney stones in people with RA. I started having kidney stones in high school for no apparent reason. It wasn’t until extensive testing and numerous specialists later that we realized they were a product of a bigger issue. Another strange and less-known RA-related issue.
- FDA Advises Caution When IV Methotrexate-PPI Used Together— Released on the 21st as a warning from the FDA, patients with PPI’s using intravenous Methotrexate may have elevated serum levels of MTX with “toxic consequences.” A new warning is being added to MTX labels— something to be aware of.
- Anti-TNF Nanobody Drug Reduces RA Symptom Severity— A new TNF blocker is on the way to Phase III clinical trials thanks to Pfizer— meaning a new prospective treatment with no fatal adverse affects found and promising results. Safety for this new prospective drug seems to be high on the list of priorities. Another step closer.