Physical Therapy and Another Doctor

Physical Therapy

I started Physical Therapy about a month ago. The first time was pretty cool--he had me do some stretches, and he found out that my hip was out of joint. So one of my legs was short than the other one. He popped it back into place, gave me some instructions, and sent me on my way. The last time I saw him, he was pleased with how things have gone. I see him again in a few weeks, and that should be my last time. It has really helped my hip pain, though I still hurt sometimes. I've also started sitting on a heating pad ten minutes before bedtime, which seems to help.

Another Doctor

Today I saw my Endocrinologist for a thyroid follow-up. It went well: My thyroid is almost perfect. I mentioned to her some tremors I've experienced in my leg. She's referring me to a neurologist. So we'll see how that does. Seven doctors! Yay. Eh.

My Rheumatology Appointment

I saw my Rheum. specialist today. I think the appointment went well over all - I really like this doctor.

I mentioned to him that the pain in my hands has spread to my palms, so that if I press my palms against something it will hurt. I also mentioned that I have noticed tremors in my legs, where I'll be doing something normal and my legs will start shaking badly. The day after my last tremor-leg-thing, I woke up feeling like someone had beat up my leg with a baseball bat. Even though it felt bruised, there wasn't any visible change. He said that for the palms, that was normal. But the tremors he's going to mention to my regular doctor - it's very likely not something RA related, so she might have some other ideas. (I'll probably also mention it to my thyroid doctor when I go next month.) If they think it's serious enough, they might refer me to another specialist to get checked out (that would seven doctors, I believe).

Anyway, he did the normal check-up stuff where he pushes on my hands and moves my legs around. All that went fine. I'd brought a list of questions, so I might as well just go down the list here.

Is pursuing acupuncture therapy a good idea? Would it be helpful? Can it be used in place of the medications?
The answer is yes - I could use acupuncture instead on Mobic, and it might do just as well/better. But it is not a cure-all. I will not be able to use it instead of one of the toxic/hard core Rheum. drugs. If my RA flares up, I have to take the real medicine, though I can still use acupuncture on the side to treat the pain/symptoms. (My thought is that if I go on medication that takes weeks to a month to start showing signs that it's working, I could do the acupuncture so I don't have to take Mobic or something while I'm waiting for the tough drugs to kick in.) It's our decision though. I think the nearest specialist is about an hour away, and I'd have to go once or twice a week, and I highly doubt the military will cover the expenses.

What medications can I take in conjunction with my medicines (i.e. mobic + methotrexate etc)?
Yes, if the pain is extreme. But we want to keep medication to a minimal. (My doctor calls my medicine "poison.") I'm all about minimal drugs, so that's fine with me.

I want to get treated for the hip problem/bursitis. What do I need to do to treat it?
I can get a steriod shot, but again we want to reduce the amount of drugs I'm on. I've been referred to physical therapy, so I'll start that up soon. After a month or so of doing that, I should stop having pain. I'm being taken off of Flexeril, because it doesn't seem to be helping anymore so there's no point in continuing to take it.

Are there nutritional treatments for RA/RA symptoms? Should I avoid certain foods? Do some foods help reduce inflammation?
No. Unfortunately, there are no foods to avoid or focus on for RA.

I got some bloodwork done, and in a few days we're going to call in to make my next appointment, see how the bloodwork looked, and sign up for physical therapy. I should be hearing from my regular doctor about the leg tremors and what she wants to do, but if I don't I can always mention it to my thyroid doctor next month. I also want to make an appointment with my tummy doctor to discuss the weird cramps and such, but before that I really need to get in the habit of doing all my fiber pills and stomach medicine regularly. (Ech. Not fun, I tell you - though I will say, taking the stomach medicine in Root Beer works wonders. I can't even taste it anymore.)

Medications

Follow are the medications I have to decide about, with condensed information about them.

Sulfasalazine

• It is not a pain killer.
• Sulfasalazine has been found to reverse the scarring associated with cirrhosis of the liver
• According to the findings of a case series published in BMC Musculoskeletal Disorders, the use of sulfasalazine in the treatment of inflammatory arthritis can result in serious hepatotoxicity (chemical-driven liver damage) - an adverse effect which appears to be ‘under-appreciated’ in practice.
• The use of sulfasalazine has declined due mainly to the fact that it yields the metabolite sulfapyridine which gives rise to side-effects such as agranulocytosis (an acute condition involving a severe and dangerous leukopenia (a decrease in the number of circulating white blood cells (leukocytes) in the blood) particularly of neutrophils (a hematological disorder characterized by an abnormally low number of a type of white blood cell called a neutrophil) causing a neutropenia in the circulating blood) and hypospermia (a man problem).
• Sulfasalazine, and its metabolite 5-ASA, are poorly absorbed. Its main mode of action is therefore believed to be inside the intestine.
• When treatment for arthritis is successful, pain, joint swelling and stiffness will be reduced and this may slow down or stop the development of joint damage.
• Because sulfasalazine and its metabolite 5-ASA are poorly absorbed into the bloodstream, it is surprising that the drug is effective against symptoms outside of the intestine. One possible explanation is that, given that ulcerative colitis produces arthritic symptoms, it is possible that, in some cases, the arthritic symptoms are actually a product of unrecognized ulcerative colitis, which is effectively treated with sulfazalazine.
• The other metabolite, sulfapyridine, is absorbed into the blood
• It is a pill.
  

Side effects

• Nausea (controlled by a reduction in dose)
• Occasionally mouth ulcers, a sore mouth or loose bowel motions may occur. Certain patients may develop a headache or slight dizziness but adjusting the dosage may bring things under control.
• A rash may develop which may be itchy, but usually resolves quite quickly once the drug is stopped. Sulfasalazine can in rare cases cause a drop in the numbers of white blood cells which are needed to fight infection. If the blood count is monitored closely, it is unusual for this to be serious. Sulfasalazine can decrease the numbers of platelets, cells which help to stop bleeding, but again it is rare for this to actually cause problems. If however you develop a sore mouth, mouth ulcers, easy bruising, nosebleeds or bleeding gums, your doctor should be notified immediately.
• The other potential problem is that sulfasalazine can cause a type of hepatitis (liver inflammation)
• Sulfasalazine always causes some orange discolouration of the urine and your perspiration may be a little orange-tinged.
• Temporary infertility may also occur in women
• Myelosuppression (Bone marrow suppression) has been reported

Methotrexate

• It is an antimetabolite (a chemical with a similar structure to a substance required for normal biochemical reactions, yet different enough to interfere with the normal functions of cells) and antifolate (The antifolate methotrexate is a drug often used to treat cancer because it inhibits the production of the active form of THF from the inactive dihydrofolate (DHF). Unfortunately, methotrexate can be toxic, producing side effects such as inflammation in the digestive tract that make it difficult to eat normally) drug used in treatment of cancer and autoimmune diseases.
• It acts by inhibiting the metabolism of folic acid.
• Methotrexate competitively and reversibly inhibits dihydrofolate reductase (DHFR), an enzyme that participates in the tetrahydrofolate synthesis.
• It can be taken as a pill or a shot.
  

Side Effects

• Miscarriage (while using drug)
• Anemia (weakness, fatigue, paleness)
• Neutropenia (a hematological disorder characterized by an abnormally low number of a type of white blood cell called a neutrophil)
• Increased risk of bruising
• Nausea and vomiting
• Dermatitis (inflammation of the skin)
  
• Diarrhea.
  
• A small percentage of patients develop hepatitis (implies injury to the liver characterized by the presence of inflammatory cells in the tissue of the organ)
  
• There is an increased risk of pulmonary fibrosis (refers to a group of lung diseases affecting the interstitium of the lung).
• There is a risk of a severe adverse reaction if penicillin is prescribed alongside methotrexate. There have also been some reports of central nervous system reactions to methotrexate especially when given via the intrathecal route which include myelopathies and leucoencephalopathies
• There have been reports of exacerbation of depressive illness with methotrexate.

Humira

• HUMIRA is a medicine called a TNF blocker, that is a type of protein that blocks the action of a substance your body makes called TNF- . TNF- is made by your body's immune system. People with Rheumatoid Arthritis have too much of it in their bodies. The extra TNF- in your body can attack normal healthy body tissues and cause inflammation especially in the tissues in your bones, cartilage, and joints. HUMIRA helps reduce the signs and symptoms of Rheumatoid Arthritis (such as pain and swollen joints) and may help prevent further damage to your bones and joints.
• Clinical trials on HUMIRA have indicated that many people using HUMIRA experience relief from the signs and symptoms of RA (such as pain, swollen joints and tiredness) as early as 1-2 weeks. Importantly, TNF blockers may also help prevent damage to your bones and joints. This is important because, once bone and joint damage from Rheumatoid Arthritis happens, it is permanent. Joint damage also plays a big part in how you will feel in the future. As with all medicines, HUMIRA will work better for some people than for others.
• It is a shot.
  

Side effects:

• Serious side effects, which sometimes lead to death, have happened in patients taking HUMIRA.
• Serious infections. These infections include TB (tuberculosis) and infections caused by viruses, fungi, or bacteria. Your doctor will examine you for TB and perform a test to see if you have TB. If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with HUMIRA and during treatment with HUMIRA. Even if your TB test is negative your doctor should carefully monitor you for TB infections while you are taking HUMIRA. Patients who had a negative TB skin test before receiving HUMIRA have developed active TB. Tell your doctor if you have any of the following symptoms while taking or after taking HUMIRA: cough, low-grade fever, weight loss, or loss of body fat and muscle.
• Certain types of cancer. There have been cases of certain kinds of cancer in patients taking HUMIRA or other TNF blockers. Patients with RA, especially more serious RA, may have a higher chance for getting a kind of cancer called lymphoma. Some patients receiving HUMIRA have developed types of cancer called non-melanoma skin cancer (basal cell cancer and squamous cell cancer of the skin), which are generally not life threatening if treated. Tell your doctor if you have a bump or open sore that doesn’t heal.
• Allergic reactions. Signs of a serious allergic reaction include skin rash, a swollen face, or trouble breathing.
• Hepatitis B virus reactivation in patients that carry the virus in their blood. Tell your doctor if you have any of the following symptoms: feel unwell, poor appetite, fatigue, fever, rash or joint pain.
• Nervous system problems. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
• Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
• New heart failure or worsening heart failure you already have. Symptoms include shortness of breath or swelling of your ankles or feet, or sudden weight gain.
• Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
• Common side effects of HUMIRA are: injection site reactions (redness, rash, swelling, itching or bruising), upper respiratory infections (sinus infections), headaches, rash and nausea.

Rheumatoid Arthritis

High time I post what happened at my last Rheum. appointment.

According to my bloodwork and symptoms, my doctor thinks that I likely have Rheumatoid Arthritis. He said to totally forget Fibromyalgia had ever been mentioned, because the doctor who diagnosed it didn't have his cap on straight and according to the studies he's done on me I don't have it. He also mentioned that I could possibly be experiencing a freak growth spurt that some girls go through from 18-25, where it looks like they have a Rheum. disease, but then it goes away. However, I still need to look at treatments.

He said that I probably have bursitis in my hip, which is why I have hip pain. I think this is cured through shot injections (*shudder*) but I'm not sure.

I've researched several of the different options for RA medication, and I'm planning on posting them here soon. I see him again in two weeks or so.

abdominal pain

Thought I might as well record the symptoms while I'm pulling through one of the phases.

Nearly at random, but often when I am hungry or at/around 11:00 in the morning, I feel severe lower abdominal pain. This has been known to happen routinely at days at a time, or sometimes it will go away for weeks or a month and then start again at random. When it first began, it started when I was going to eat breakfast. I would lie down in a stretch position I learned in ballet and read to distract myself. It lasted for two hours, and then faded away. This happened three times in a row.

I used to describe it as feeling like two hands were pulling apart my insides. But it is more accurate to say it feels like someone is taking a spoon and scraping out my insides. It's like when you are emptying a pumpkin of all the guts at the bottom with a dull spoon, and you have to scrape and scrape the hard edges to get out that last bit.

These pains do not seem to follow any sort of monthly pattern. They just seem to come at random.

I'm not sure if it's in my head or not. Several times it got so severe I felt like I was going to die, so I told someone. Within ten or twenty minutes, the pain dissipated and I was fine. However, I have had instances where telling someone didn't help.

Now I commonly only feel the pain for a period of about 20 minutes before it fades off. The stretch position I thought was working doesn't work any more.

I don't know if it's something related to whatever Rheum. thing is going on, or if it's something new, or if I'm just blowing it out of proportion in my head. I've mentioned it to several doctors, but I think they attribute it to womanly things. This is partially my fault, because I have been calling it cramps. The truth is, I've never felt this sort of "cramp" before, and never had this problem until after all my Rheum. stuff came up.

I probably should go see my stomach doctor again.

Symptoms

(I really need to update about my follow-up and other stuff. But for tonight I'm just going to post this.)

Symptoms/Timeline

2002 (12 years of age):

Weight loss, Extreme fatigue, Insomnia

2003 - 2007 (13-17 years of age):

Blue feet and hands (Raynaud’s), Fatigue, Dry eye begins, Rash after showering, sometimes after being in the sun, Intestinal troubles begin, Insomnia

2007:

Develops small red spots (like tiny broken capillaries) on arms, look like tiny freckles but they bleed.
Raynauds becomes more severe – begins to have toenail issues
Develops a shaking/tremor in her arms/hands especially when inflamed or under stress.

February 2008:

Thumb on left hand began to hurt. By mid-February thumb causing extreme pain and swelling in “flare ups” came and went. Insomnia more pronounced because of waking up during the night in pain.

Develops night sweats.

March 2008:

Left hand gets progressively worse, involving all the other fingers of the hand, loses ability to use the hand because of pain, swelling, inflammation. Worse in the morning, somewhat better in afternoon.

Right hand begins to hurt. Raynauds is extremely severe. Begins to lose toe nail on right foot.

Shaking/tremor is more frequent and more pronounced.

Sees PCM, has initial blood work, referred to Ped. Rheum.

April 2008:

Begins to develop hip pain.

See Rheum. ANA, CCP, RF, and antithyroid peroxidase are abnormal. Put on Mobic 7.5 twice per day. Referred to Endo for thyroid, Opthomology for dry eye.

May 2008-Aug 2008:

Seen by Endocrinologist, put on Synthroid.

Pain levels are increasing. Severe flare ups each month. Referred to Cardiology for chest pains and shortness of breath. Diagnosed with ectopic palpitations, innocent heart murmur, and possible rheum. inflammation of the chest.

Losses ability to hold small object, open jars/bottles, brush teeth. Pain and inflammation cycle – good days and bad days.


August 2008:

See Rheum. again. He adds a diagnosis of Fibromyalgia. Prescribes Flexeril at night for the Fibro, Plaquenil daily for the rheum issue.

Develops pain in right jaw.

Right toenail continues to worse, left toenail develops black pits/holes (due to the Raynauds?)

Referred to Gastro for intestinal issues.


September 2008:

Late August/Early September brought a severe flare up which lasted more than 6 weeks. Pain and inflamation levels were high and constant.

Mom notices a rash or “blush” on Alyssa’s face. Cheeks, nose, and part of forehead red. Rash/blush seems to come and go, some days none at all, some days very evident.




Symptoms as follows:

Raynaud’s (blue feet and occasionally hands)
Fatigue
Dry eye
Pain and swelling in hands
Pain in jaw
Pain in hip
Pain in feet (occasionally)
Rash after shower
Capillary rash
Insomnia
Intestinal
Dizziness
Shaking/tremor
Night sweats
Some back (kidney?) pain
Rash/redness on face

My New Rheumatologist

Today I had the long awaited appointment with my new Rheumatologist.

It went well. I mean "well" as in I like my new doctor much better than the old one. He was ready for us as soon as we were checked in. We had made another list and timeline of my symptoms, but he had me tell everything to him rather than just read it. I did pretty well speaking up and talking without Mom. (She was with me, of course.) Anyway, we discussed a lot of things for a while and he took good notes. Near the end of the appointment he did a physical check.

During the appointment, as I talked about being diagnosed with Fibromyalgia, he sort of looked at me funny and went, "Hmmm." After asking exactly what my old doctor had done and said, and listening to the rest of the story, he told me that he is hesitant to agree with my other Rheumatologist's diagnosis. Apparently the pressure-point test he did was outdated, and really doesn't work. Rather, it does work, but it works on normal people as well as Fibromyalgia patients. Furthermore, some of my symptoms point away from Fibromyalgia and more towards Rheumatoid Arthritis (or something else all together).

My doctor was also sort of confused as to why my first doctor had me taking Plaquenil. (Which, according to my eye doctor and stomach doctor, can hurt the eyes and gut.) Because we don't know what is going on, we don't know what we're treating with Plaquenil, so it doesn't make sense. He recommended that I stop taking it, because it might help if I end up being diagnosed with Sjögren’s Syndrome or Rheumatoid Arthritis, but it won't do anything for Fibromyalgia or other conditions. Mom and I thought it was probably good to stop taking it, because frankly the if I can get by without a medication I really don't need the unnecessary pills on top of the handful I am required to take daily.

The doctor was really, really considerate and good at listening and explaining. He threw out a few possibilities, but really we're starting all over at step one again. It could be that my thyroid is to blame. When my old doctor talked about that, it made me really frustrated and mad because my thyroid isn't out of control. But my new doctor explained that Raynaud's Syndrome (blue hands and feet) can be caused by the thyroid, and other joint pains can come into it too. Because he actually explained the reasons to throw that out as a possibility, it didn't bother me so much. Also, it's possible that my symptoms are something seasonal, and that in a couple of years they'll melt away. Or I could have Sjögren’s. or I could have Rheumatoid Arthritis, or Lupus, or whatever. His point was that we really can't say, and he doesn't want to label me with something and then have it be the wrong thing. Which is exactly what I want to hear.

He really seems committed to the Mystery Diagnoses factor--meaning he's willing to work with me until we come to some sort of conclusion. He ordered a ton of bloodwork, and a lot of x-rays (vs. the three x-rays my old doctor did--which we aren't even sure he looked at). We're supposed to call him on Monday and schedule a follow up in three to four weeks (vs. sometime in six months that my old doctor felt like I should be seen).

Anyway, it was overall very encouraging.

Except they did take a ton of blood. By the time I got out of radiology, I was beat. I've just gotten home (four hours after we left the hospital) and basically just had enough energy to climb into PJs and curl up on the couch.

I have an appointment with my normal doctor on Wednesday for some minor things.

I did find this pretty cool little symptom checker last night, which is oddly fun to play with.

If I say, 'I will forget my complaint, I will change my expression, and smile,' I still dread all my sufferings...
Job 9:27-28

Follow-Ups and Referral

Yesterday I had a follow-up appointment with my tummy doctor. It turns out that whatever is going on in the tummy area is more serious than he thought at first. After some discussion, I decided to opt with another couple of weeks with natural treatments instead of jumping into some uncomfortable testing. I have several vitamins and other health pills to take (on top of the medication I'm already on--not that these will hurt, because it's really just fiber and other natural things, it's just a hassle). I'm supposed to try these new pills for a couple of weeks, and then we'll go from there.

I saw my eye doctor on the same day. Everything appears to be going fine, with no damage to my cornea despite dry eye and the autoimmune medicine I'm taking (which apparently can harm your eyes, in rare cases). We mentioned that we were waiting to get a referral to see the Rheumatologist. (Now that I'm eighteen, I can be seen by the one that's local.) My doctor was like, "Oh, I'll just put that in for you." We were like, "Wow, thanks!"

So I have an appointment with Rheumatology on Friday. It's sort of sad how easy that was.

I also have an appointment with my normal doctor sometime soon, but I've forgotten when.