Getting ready for a big storm can take extra time when you have rheumatoid arthritis (RA). And with hurricane season in full swing and it seems the tropics are starting to become more active, it is a good idea to make sure that you are prepared now in case a hurricane should strike your area. Those of us on the east coast of the United States are used to getting things ready for the hurricane season and there are many things to stock up on. It is important to make sure that you have everything you may need in case you loose power for an extended length of time. Do not wait until the last minute to get ready.
Plan Ahead: Things take longer when your joints are stiff and sore so make sure that you are ready long before the storm is in your path.
Prepare: Put together a Hurricane Supply Kit. Keep the kit in an easy to access location. Make sure to include:
Water: You will need 1 gallon of water per person, per day
Food: You will need non perishable food, make sure to include a non electric can opener and paper plates, cup and plastic utensils
First Aid Kit: Make sure to include at least a 7 day supply of any prescription medication you may need as well as any adaptive equipment you may need. Remember the extreme changes in barometric pressure in a hurricane are likely to cause swelling in those effected by barometric pressure like me. Some medications require refridgeration, so in addition to making sure you have an ample supply, it might be a good idea to look into a gas powered generator and make sure that you have gas on hand to run it.
Ice: If you are not directly on the coast and there is no need to evacuate, you may need ice to keep perishables cold. Put a thermometer in the cooler to make sure the temperature does not go above 40 degrees farenheight
Clothing: Put together some seasonal clothing for you and your family members, remember rain gear and sturdy shoes.
Flashlight: Several flashlights with plenty of batteries
Telephone: Make sure that your cell phones are fully charged and you land line has a corded phone plugged into the jack.
Cash: You may not have access to a bank or ATM for a while so it is a good idea to keep some cash on hand in case you need it.
Radio: Keep a battery powered radio on hand so you can keep up to date on any news should you loose power.
Important Documents: Should you need to evacuate, put your important documents in a water-tight plastic zip bag (i.e. insurance cards, medical information, etc…)
Fuel Vehcle: Make sure that your vehicle is filled up with gas prior to the storm.
Pets: If you have a pet, make sure that you have plenty of food and water for them as well. Keep an additional leash and/or crate for travel if necessary.
Blankets/Bedding: Blankets and pillows, etc…
Escape Plan: Should you need to evacuate, have a plan. Decide ahead of time where you will go and how you plan to get there. Have an alternate location and route marked out as well.
Find help: Call around and find a handyman or neighbor that would be willing to help board up things should a hurricane strike your area. It is important to ask for help when you need it and things like taping windows or hanging plywood may be too much especially if you are flaring.
This is an interesting and important service that google is providing. It certainly would give the patient more hands on control of their medical records and the information contained within. I like the idea of actually being able to look at my own medical records and that in theory they could all be located in one place. I have many different doctors and I really think that if they could all share all of my medical records it would be more of a team mentality when it comes to my health as opposed to each doctor taking care of his or her own part of the equation. I am a little concerned about security issues and certainly privacy issues. I hadn’t heard of this feature that google provides and just stumble upon this video. It seems like they still have some issues to work out but it is an interesting concept.
Currently there are several studies underway attempting to develop a vaccine for rheumatoid arthritis (RA). Scientist in the United States, the United Kingdom and Israel are conducting clinical trials for the vaccine that each country is trying to develop. Each country and trial approaches the issue from a different perspective. It will be at least 5 years before any vaccine is ready for market but it is encouraging news for those of us who deal with the effects of this disease.
Recently in Vienna, VA the Senior Vice President of Research, Cellular Immunology of CEL-SCI Corporation, Dr Daniel Zimmerman presented data that indicates that treatment with the CEL-2000 vaccine prevents or retards tissue damage caused by RA. In animal studies, mice were treated to induce the disease to a measurable level at which point they were treated with either Enbrel or CEL-2000. Over the course of 28 days the CEL-2000 was injected twice and Enbrel every other day and an arthritis index score was given both both sets of test animals. The study was continued for an additional 28 days after which it was determined that the new vaccine was able to reduce the effects of severe rheumatoid arthritis with a simple vaccination. Human clinical trials have not yet been scheduled.
Scientists at Newcastle University’s Musculoskeletal Research Group in the UK are hoping to develop a vaccine using patients own blood cells to suppress the effects of rheumatoid arthritis (RA). The research is being funded by a 216,000 pound grant from the Arthritis Research Campaign. John Isaacs, Professor of Clinical Rheumatology at Newcastle University is leading the team that will test the effectiveness of the experimental vaccine on eight rheumatoid arthritis patient volunteers. The patent’s own blood will be harvested and treated with the vaccine and then injected back into the patients affected joints. If these experiments are successful, future larger scale trials will be scheduled.
In studies funded by the Israeli company ProtAb late stage clinical trials for an antibody treatment called Protimab are underway. The technology was founded from the research conducted by Professor Yaakov Naparstek of Hebrew University in Jerusalem. This antibody that they have developed targets the molecules in the body that stop pro-inflammation cytokines from doing their job rather than attacking the molecules that cause inflammation. The company hopes to begin clinical trials for Phase I & IIa within the next two years.
All this is a hopeful sign for those of us with rheumatoid arthritis. Which company or country has the best solution to the issues that face those of us with RA has yet to be determined. The results of these and other clinical trials and time may be the determining factor.
Good news for drug manufacturers who make biologics is not good news for patients who rely on these drugs to fight rheumatoid arthritis and other diseases.
The results of a recent study published in the Annals of the Rheumatic Diseases indicate that the drug methotrexate (MTX) appears to be safe for long term treatment of rheumatoid arthritis. This conclusion was based on data collected from 88 studies that involved patients treated with methotrexate for at least 2 years.
Methotrexate is classified as a disease-modifying anti-rheumatic drug also known as a DMARD. Methotrexate had been used to treat psoriasis and cancer prior to its approval by the U.S. Food & Drug Administration in 1988 to treat rheumatoid arthritis. It is also used to treat other autoimmune diseases including ankylosing spondylitis, psoriatic arthriis, lupus and vasculitis. It can take from 6 to 12 weeks to feel the full effect of this medication. Taken once weekly via either 2.5 mg tablets or self injection, methotrexate blocks certain enzymes that affects the production of folic acid which is necessary for growing cells. Therefore it is necessary to take folic acid suppliments while on methotrexate.
It is important to avoid drinking alcohol while using this medication because of the increased risk of liver damage. Methotrexate can cause abnormal liver function so it is necessary to have blood work monitoring done every 8 weeks. The 88 studies concluded that 13% of people taking methotrexate experienced elevated liver enzymes however only 3.7% had to stop using the drug due to liver toxicity. Other side effects include nausea, vomiting ( may be based on the dosage), mouth sores, rash, diarrhea, blood count abnormalities, persistent dry cough, unexplained shortness of breath, cirrhosis of the liver ( rarely), gradual hair loss, and sensitivity to sunlight. Some over the counter and prescription medications may increase the toxicity of methotrexate so it is important to check with your doctor or pharmacist before taking any additional medication. Methotrexate can cause birth defects and can cause complications during pregnancy. It should not be taken if you plan on starting a family.
Patients in the study experienced side effects but usually mild. Methotrexate rates of discontinuation were less than gold, sulfasalazine and penicillamine but more than plaquenil in this study.
Of the 88 studies only 2 assessed the relationship between methotrexate and cardiovascular disease. One study concluded that there was no increased risk of cardiovascular disease, the other suggested that there may be a reduced risk. There was no increased risk of infections linked to methotrexate.
I had planned on doing an update on any news regarding the swine flu for a while now. I planned on keeping up to date on the spread of the virus and certainly a reminder update when it got closer to flu season for those of us in the Northern Hemisphere. What I hadn’t planned on was the swine flu hitting my home so soon. As of the writing of this post we have been dealing with the swine flu for 10 days now. This morning”s paper announced that another Rhode Islander has fallen victim to this virus. We are told that she had an “underlying medical condition”.
Late Sunday afternoon a week ago my 9 year old son Kevin started to get quiet. He was just not is usual bubbly self. He is normally a very active chatty boy. My little firecracker. He started slow down quite a bit and I even found him sound asleep in the middle of the day. Not at all like my Kevin. My motherly instinct new that something wasn’t right. As the day wore on he seemed to lose his appetite and was way too quiet. His color was off, he looked pale to me.
Later Sunday evening I went in to check on him and he felt really worm. I took his temperature and it read 104. Not a number I am comfortable with, but Kevin is my third child and I have seen dozens of times when one of the kids would spike a temperature only to have it go back down 24 hours later with no explaination. I knew what I needed to do. I gave him some ibuprofen and put a cold compress on him and gave him plenty of fluids. The ibuprofen seemed to bring the temperature down but only down to 100.2. I knew then it would be a long night. Every hour I checked his temperature, made sure that I kept a cool compress on him and watched and naturally worried. He seemed to be out of it the next morning, but then again Mom had been into bother him many times the night before.
First thing the next morning I started asking questions, Does anything hurt? Do you feel achy? Do you have a head ache? He said no he just felt cold. I suspected that was his fever that was making him feel cold. I continued to monitor him and by the end of the day his fever seemed to have broken and I thought it was just one of those 24 hour things that kids get.
Boy o boy was I wrong .
The next few days he had no fever or aches or pains just coughing and coughing and more coughing, post nasal drip and stuffy head. Night after night coughing all night long. He had no appetite but I was grateful that he was drinking plenty of fluids. Although I was not happy about his cough I was not overly concerned by it either. I gave him some cough medicine. I thought that he had caught a summer cold.
Then late Thursday evening he started with another fever. This time the fever was only 102. I knew at this point it was neither just a cold nor a 24 hour thing. He needed to see a doctor. This thing was not getting better on its own and now he’s got fever number 2. The first thing Friday morning I called the pediatrician’s office. We were lucky and got a 10:00am appointment. On the way there Kevin starts telling me how much better he is feeling. I still wanted the doctor to take a look at him.
We got into to see the doctor and after a thorough check up he announces that Kevin has all the symptoms of the swine flu. He tells me that he is seeing a dozen cases every day and they all seem to follow the same pattern. Initially a really high temperature that seems to pass after about 24 hours followed by cold like symptoms and then a secondary fever with contiunuing cold like symptoms. He even had one patient in the hospital with this virus. He also tells me that the state is not testing anymore because it is too expensive for so many mild cases of this virus. He said that the only time that the state would test is if the patient ended up with complications that cause them to end up in the hospital. He then tells me that Kevin has seen the worst of it and there is really nothing to do but keep an eye on him and if he gets worse come back in, but he didn’t anticipate that happening.
I actually asked the doctor if he was sure that it was the swine flu. I just couldn’t believe what I was hearing. After the shock wore off I asked the doctor if I should be concerned because of the medication I take for my RA. He suggested that I call my rheumatologist immediately which is exactly what I did. She put me on tamiflu for ten days and wanted immediate blood work done to check on my white blood count..
While we have spent the better part of 2 weeks now coughing and sneezing with tissues galore in my house, this was according to the doctor a really mild case of this H1N1 flu virus. The doctor’s say that we are actually lucky to have caught this virus now when the symptoms are mild so that our bodies have the chance to build up a resistance to this virus come flu season. I want everyone reading this to know I am very concerned how bad this will be during flu season. If what we have experienced is mild I for one cannot imagine what severe of even a normal case of this virus is like. When the flu vaccine is available I would suggest that everyone get it. You do not want to get this virus.
All information is intended for
your general knowledge only and is not a
substitute for medical advice or treatment.
You should consult your physician for any
health issues.
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