Friday, April 10, 2009

It has been a long time since I updated my RA Ramblings and there are lots of reasons (& excuses). The short version is we moved to Wisconsin and I have a new doctor. The new doctor could not find evidence of the RA, which means either the RA has gone into remission or it was misdiagnosed. RA can go into remission and based on what I have read if it becomes active again, it is really aggressive.

My current doctor believes, based on what he sees in my medical history, that it was misdiagnosed. He said there are a many things that can cause symptoms similar to RA; based on my age (I was almost out of the age range for RA being diagnosed), and the lack of joint damage – he believes there was something else going on in my body.

Given all of that, I can say I feel good. I still have pain in my hands, elbows, and my feet get stiff if I sit too long, but it is not as bad as it was. I can do what ever I want and suffer the aches & pains based on how out of shape I am. My overall health is good and my emotional health is improved with the news of no RA.

Soon, I will take down this page since there is not much to write about regarding this topic – thankfully.

Monday, June 23, 2008

I am still not taking any medicine but ibuprofen for aches. I have injured my knee chasing grandkids and taking ibuprofen for it. My hands are sore and sometimes very red. My elbows and ankles are also sore. There are a couple of swollen places between the joints of my fingers. But all in all, I am not hurting too much.

Recently one of my sons sent me a website with information about an alternative way of treating RA. I have been reading about it and want to talk with my doctor about some of the ideas. My RA seems to have come on so suddenly and with erythema nodosum as a pre-cursor, I am about convinced the RA started due to an infection or something like that. I just wonder if, suppressing my immune system is the best way to treat it.

I have no desire to become crippled and deformed by this disease, but I do want to consider other options while I still have options.


Tuesday, April 15, 2008

It has been a very long time since I updated my RA blog and there are many reasons and excuses – way too many – so please accept my apologies and we will move on.

My RA seems stable; I guess that is the best word for it. Most days the pain is manageable and I can move pretty well. Then there are the days when all I want to do is lie in bed and wait for the second coming of Christ. But for the most part, life is good.

I am currently taking nothing but over the counter medicines for pain (Tylenol, aspirin, or ibuprofen). The decision to stop the meds seems haphazard as I try to write about it. It all started when I breathed in cleaning fumes last June. In December I was still having difficulty breathing. There is even talk that the RA may have moved into my lungs when they were weakened and my body sent all those antibodies to help heal the lungs. This is pretty scary as there is really not much to be done except treat the symptoms with asthma medications.

I seem better and can breathe pretty well. I haven’t gone back to the doctor and I am not taking any asthma medications, my choice. I guess I am really rebelling about taking medications. I am not opposed to taking medications, I have just grown weary.

When the RA was first diagnosed, a man I worked with told me I was about to learn why they call it the “practice of medicine.” I feel at times the doctors are practicing on me and I am tried of being the practice dummy.

I am sure I will start taking meds again, but for now I am taking a break, letting my body cleanse itself, dealing with the pain, and in the future, will look at it again.

Elaine H.

Tuesday, July 17, 2007

It has been a long time since I wrote an RA ramble, so here is the update. I had strep throat that resulted in a trip to the emergency room. I had been running a fever for a couple of days and it was getting higher and higher. When I called the doctor, my fever was 102. My doctor ordered me to the emergency room. Fever means infection and with my suppressed immune system, an infection can become life threatening. I felt foolish going to the emergency room, but there I was.

It has taken 2 weeks for my throat to heal but now I have this lingering cough. The short of all of this, is I have not had any of my RA meds for 3 weeks. I have been expecting the inflammation to come roaring back and all the progress I had made to be undone. To my great surprise, I feel pretty good – outside of the strep throat stuff. There is some swelling in my joints but it is not terrible, but it is time to start my meds again. It was fun while it lasted.

Tuesday, June 05, 2007

Choices …

My RA is responding to the Enbrel. I have a lot fewer swollen joints and generally I can move better even after sitting for a long period of time. I definitely have more energy, which has helped my overall attitude.

Because the Enbrel is doing what it is suppose to do, suppress my immune system, I had a bad experience with some cleaning solution fumes. The other day the cleaning crew came over to clean a spot off the carpet, the smell from what they used triggered a response in my system – my throat began tightening and my voice just disappeared. I went home and after 3 or 4 hours, I was doing much better. Throat was scratchy but my voice was much better. I return to work this morning and the smell was still there – not nearly as strong but evident. Within 2 hours, my voice was gone and my throat was burning. I left and went to the doctor. At the doctor’s office, they measured the oxygen level in my blood, it was decreased, and my blood pressure was elevated to reflect my body was under stress. My doctor said because my immune system is being suppressed, the reaction was magnified and it will take my throat longer to heal. Therefore, I am at home working and trying not to talk so my throat can heal – not too hard when it is just the animals and I at home.

As my doctor put it, you have to decide what you can live with – pain and the potentially crippling effects of RA or a stronger immune system that can fight the day-to-day stuff. Not a choice I like making, but for now I look to the future and opt to fight the effects of RA.

Monday, May 21, 2007

I have started the Enbrel and it is very surprising how I feel. My energy level is greatly improved, most of my joints have quit hurting so much, and generally, I have a better attitude. I have been going to the doctor’s office for my weekly injections. However, I need to learn how to do it myself. We are planning a vacation that will span two Mondays (the day I get my shot) and I do not want to shorten our vacation because I am such a sissy.

I am still concerned about a seemingly minor infection killing me. Therefore, I take the ostrich approach to this side effect, while also avoiding a social setting where I know someone is or has recently been ill. So far, I have not become a social outcast and my grandchildren still love me.

Mornings are still tough but it takes less time to get all the joints working. Riding or sitting for more than 30 minutes at a time is not fun – well really it is just the getting up that is not fun.

Life goes on, thankfully.

Sunday, April 22, 2007

Something New ...

Well, it has been a long time since I Rambled about my RA. Things are about the same which is not good. (Hands, toes, elbows, hips, ankles, and knees all swollen and painful) With the medicines I have been taking my doctor was hoping for better results. My doctor does not want to increase the Methotrexate since I had some problems at higher levels. Since I had such bad side effects from the Plaqunell (vision problems) the next step is new medicines added to the ones I am currently taking – Methotrexate and Sulfasalzine.

I just picked up my first month’s dosage of Enbrel. This is a relatively new drug (not experimental) that has been used about 10 years. It is injected once a week. One of the biggest side effects is even more susceptibility to infections. My doctor said that once I start this drug even a relatively minor infection – say a throat or bladder infection – could kill me if I don’t get started on antibiotics immediately. Minor infection – kill me! That is a pretty scary thought.

I was talking to one of the professors at my work who has taken Enbrel. She said it’s nothing and she didn’t have any side effects from it. Not sure what she is currently taking. Given her hearty endorsement, Internet research that shows relatively few problems, my doctor’s recommendation, and living with constant pain, I have decided to give it a try.

Today as the pharmacist was explaining how to inject the medicine; I got weak in the knees and almost started crying. Now as I write this Ramble, I am fighting tears – why am I so upset? I don’t really know or understand my reaction.

Just a side note – the retail price of a month supply is $1521.91. That is 4 filled syringes at something over $330 each! If I didn’t have insurance, I could not take this drug- it would be way more than I could afford. I know the drug company has provisions to help people pay for this drug because this is something the average or even above average wage earning person could not pay for over a long period of time.

I hope it works – I would like to wake up and be free of pain, to be able to get out of a car without looking like an old woman, and not have the bottom of feet hurt most of the time. Funny what living with pain will make you appreciate.

Again, I do not understand why I am so upset over all of this but I am.


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