Thanksgiving

I have much to be thankful for.  I have been feeling better than I have in a long time.  Saw my rhuematologist last week and he is quite confident that the Rituxan is the key here.  I suggested we go ahead and do another infusion, but he said the rule is that while all is going well, leave it along.  When I start feeling poorly, then we will consider the Rituxan again.

Will be with family for this holiday celebration and looking forward to having everyone with me!

Update

I'm still feeling pretty good.  Tom & I are thinking more and more that the Rituxan infusion was a good thing after all.  Here it is October  - six months since the infusions.  I see my rhuematologist in November and will discuss whether or not to do more of the Rituxan at that time.

Update

The only major complaint is not enough energy!  More of that would be great!  The Lupus seems to really drain me.  Still feeling quite good.  Some pain in the front joint where the leg goes into the hip; moreso in the left.  I think yoga seems to help it since it is stretching and that's exactly what is needed.

I've lost a few pounds on a diet called Medifast, which was recommended by my rhuematologist.  I am really happy with this!

A Wonderful Vacation

I'm feeling quite well these days, but this is after a great 2 week vacation.  I felt well during our travels and came home feeling better than I have in ages! 

Need to get busy with a weight loss plan and knock off some of these pounds.  Then I will really feel good!  That should do wonders for my blood pressure!

Just have to relish these good days.  Enjoy and appreciate them!

Not HSV Afterall

Had a 6 mo. checkup with my primary care physician yesterday and after many questions, he determined that I did not have HSV nor Shingles, but rather a bacterial infection of the skin.  How did I get this?  We had stayed at a very nice winery with a huge bubble tub.  It was very, very clean, quite new.  But in the jets of the tub lay germs that my compromised immune system can't handle.  My doctor said although my case was bad enough, it could have been a whole lot worse!!  I was really rather lucky. 

I am checking with my rhuematologist now to see if I can go off the medicine he felt I should stay on for maintence for the next several months.

The Itchies Are Over

The business of waking in the middle of the night about to jump out of my skin was getting old.  The areas where there were blisters were on fire.  Thank the dear Lord that is over and done with now.  It looked like I was going to have some terrible scars, but the first of those are starting to fade and lighten up.  I know now that they will all go away, it is just taking some time.

Still Itchy

Last week Wednesday the doctor upped my medication for the HSV because I continued to breakout and was getting no relief from the itching.  Finally I am seeing the first spots to erupt are now beginning to dry and heal.  Those first ones are no longer weeping.  But the newest ones continue to itch like fire and weep horribly.  Oh, for this to be over soon!!!

New Problems

For two weeks I was on a high dose of prednisone and I am to reduce it by one mg. per week now until I get down to 7 mgs.  Then we will see how I am doing there. 

Friday morning I woke to find a spot on my thigh that was itchy.  I thought it might be a chigger bite.  As the weekend went on I got more of them and they were leaky and big and blistered.  I thought of shingles yesterday.  My rhuematologist said I better get right in to see him today.  I have HSV or Herpes Symplex Virus and it is related to and similar to Shingles.  It is caused by stress!!  Oh great!!  Just get rid of stress.....................

Doctor ordered up some high powered drug for me to take to ease the pain and itching.  I sure hope it works!!  I am miserable right now.

It's not working

Have been having swelling of my hands and feet and lots of aching.  My hips have been hurting.  Spoke with rhuematologist Thursday and he was as disappointed as I to realize the Rituxan is not working.  I did tell him all about last weekend, but he felt that with the Rituxan I should have breezed through all of that.  He upped my prednisone for now and I check back with him early in the week.

Need some energy

Good things are happening, but I am so tired!  Our new granddaughter, Vaeda, was born Friday, May 6.  She is a beautiful little girl.  We are so proud!  Her big sister, Ozaine, stayed with us while mommy was in the hospital.  Her hospital stay which would have been just a couple of days turned out to be much longer due to an emergency C-section. 

I just can't seem to get a blast of energy and have it stay with me.  The past couple of days my hips have been achey, my feet hurt, my hands have been swollen for a couple of weeks now.  Not real pleased with this.  I know that stress plays a huge part in all of this, but I thought the Rituxan would have countered the aches and pains I'm feeling.  For as much as the Rituxan costs, I don't know if it's worth it.  I guess I will have to give it a few more days to get past the stress of this weekend.  Maybe then I will really feel better.

Maybe It's Working.............

I really can't be sure just yet, but maybe the Rituxan is working.  I haven't had really BAD pain.  Over the weekend (and the weekends are always SO VERY busy) I had a little of the aching in my left hip joint, but not bad.  Just a reminder every so often.  I am still experiencing being tired and hoping that I will soon have more energy.  I am so hopeful!!

Thusday's Infusion

Thursday's infusion went pretty well.  I was prepared for all of the same sensations that that I encountered last time, but it wasn't the same.  At about 45 mins. in, I noticed that slight metallic taste and then with the next swallow, it was gone, over, and no more.  I did have the dry throat and mouth, but not quite so badly as last time.  No headache, no swelling at the time of infusion.  I went home pretty happy.  I did fall asleep during the infusion and apparently slept well over an hour (due to the benedryl).  I was thirsty last night and did drink, but it was no more than the normal amount I would any evening.  Went to bed early - I was tired.  The whole ordeal is emotionally exhausting.  I slept a couple of hours and then the rest of the night I was totally wired from the prednisone and could not sleep.  I tossed and turned and watched the clock.  When I finally allowed myself to get up this morning after a terrible night, I was so disappointed to see I had puffed up horribly!  My face is so full, eyelids are very puffy, etc.  The rest of my body is as well.  I am not wearing any rings today because my hands are so swollen.  I have a mild headache which seems to be worsening as the day goes on.  I look like a balloon.  I take satisfaction in knowing that each day it will get better and the swelling will go down a little.

 

On Friday mid morning the headache got worse and worse.  I was disappointed because I didn't think it would happen at all.  But fortunately it was gone Saturday morning!  I slept wonderfully well Friday night.

 

Easter Sunday much of the swelling was down.  I didn't look like a puffed up balloon.  I would have hated that for church this morning!

 

Enjoyed having all of my family here today.  All of us spending time together is just the best thing ever!  I love the grandchildren SO much!!

 

Next Infusion

I think I have nearly recovered from the first infusion and it is almost time for the second round.  That will be Thursday afternoon.  I dread the thought of all the bloating, puffing up, swelling.  Oh great.  But I know I have to do this.  I will get it over with and in a few short weeks should be feeling all the goodness of Rituxan!

After Infusion

The infusion was Wednesday, strange symptoms on Thursday.  Thank goodness the tight head feeling and headache were gone!  I still feel puffy all over from the huge dose of prednisone and I am still thirsty.  Doctor's office said these after effects could last up to a week.  Oh great!  On Thurs., April 20th, I will have the second infusion and I plan to try not to drink so much.  I plan to use the little suckers more to ease the dry throat.  Doctor's office also told me that I will be feeling the good effects of the Rituxan about a month afterwards.

First Infusion

Well, I did it.  It was very, very different.  I mean, I've been hooked up to an iv before, but this had extreme sensations that I hadn't anticipated.  First of all I was started with a 15 minute drip of Benydryl in case of any strange reactions.  Then 125 mg. drip of Prednisone.  Then the Rituxan.  I got started at 1:00 and was finished at 4:30.  Shortly after the Rituxan started, I felt a strange sensation on my tongue.  Sort of tingly, sort of strange tasting on the front half.  Then it went away and my throat was a dry as sand paper and the taste in my mouth was metallic.  The infusion nurse was really concerned about me, but we told her I have Sjogren's and clear my throat often anyway.  So all of my coughing and clearing was a bit extreme with all these meds.  I was drinking water like crazy, I was so thirsty and dry.  She gave me little "dum dum" lollipops to suck on to help ease the dry throat which was caused by the massive dose of Benydryl.  After the first hour, I fell asleep and dozed off and on - there again caused by the Benydryl, but still reaching for a drink in between dozing off.  My eyes were extremely dry.  I felt light headed and sleepy and very glad I didn't have to drive home.  On the ride home I noticed that the waist of my pants were very tight, but I was still so thirsty.  I had to keep drinking, but barely had room for anymore water.  Then I noticed that my hands seemed a little puffy.  When we got home and I changed clothes and took off jewelry, I couldn't get my rings off.  I really had to struggle with soap and lots of tugging.  Since I had been sitting/laying for hours, I wanted to walk, but I felt a little goofy.  My head had a strange feeling.  So Tom walked with me  and it felt good to move around a bit.

 

I feel better this morning, but still a bit strange.  My head feels a little big/puffy and my face feels like it is flushed.  I feel warm and I am always cold.  I slept with a lightweight nightgown last night because I was too hot.  That is hilarious!  I usually can't get warm enough!!  They gave me a huge load of drugs yesterday, so no wonder I feel strange.  I am sipping iced tea as I write this.  Ordinarily, it might be water, no ice or hot tea or coffee.

 

Just wanted to let you know what it was like. 

Infusion set

My rhuematologist's office called yesterday and set up my first infusion of Rituxan for next week.  How very timely.  My hip joints are aching more and more.  I am scared on the one hand, but looking forward to this on the other.

Wondering if the end of a good thing is near.................  A little aching in my right shoulder, pressure on top of both shoulders, slight aching/catch from time to time in both hips over the weekend.  Last week I was bothered by springtime allergies and last night I broke out with a cold sore in my nose.  Many people who have Lupus suffer with frequent cold sores/fever blisters.  Fortunately I haven't been having them as frequently as I used to years ago.  I think the meds seem to help.  Just not feeling quite as good as I was.

Coasting

I am coasting along right now.  No extreme pain.  GOOD!  Can't seem to get past tiring so easily.  (it's always been like that.)  Last weekend was very busy and when I went back to work on Monday, I was just drained!  I enjoy having the family over for birthday celebrations, etc., but afterwards I am so very, very tired out.  I know that is a part of Lupus, but I'd like to do better with that.

Decision

After much discussion with my rhuematologist, whom I saw late Wednesday afternoon, we have decided to postpone the Rituxan for at least 3 weeks.  I told him about my organic diet and he said that 3% of patients with these sorts of diseases who change their diet show improvement.  But it is worth doing.  So we will wait awhile and see how I do in the next few weeks.  It is a little bit scary in that I dread a bad flare up that will simply shut me down.  I must be hopeful that I will stay well!!

Doctor's Appointment

I have an appointment to see my rhuematologist tomorrow afternoon.  I've been waiting to hear from his office regarding starting the Rituxan, but was told it can take a couple of weeks to get the insurance all squared away.  Tomorrow is three weeks so I hope to find out what is going on and what is taking so long.  I feel as though I am in the calm between storms.  You never know when you have a really bad flare and I savor the inbetween times!  A person with Lupus is never "pain free", but the milder aches and pains are a breeze compared to the intensity of flares!

A Breakthrough Drug

There hasn't been a new medication for Lupus in 50 years.  It was announced today on the morning national news that now we have one - Benlysta.  What wonderful news!  I had read about Benlysta in a Johns Hopkins Medical paper about two months ago.  It sounds very promising.  It is an injectable; not an infusion drug.  I'll have to mention it to my doctor and see what he knows.

Rolled Dumplings

Yesterday I made chicken and dumplings for my husband and son, but made them the way Tom likes them:  rolled thin.  Last time I made them I couldn't have rolled them if I had wanted to.  I was in too much pain and the best I could do was to drop them.  That's Matt's favorite!  Yesterday after rolling and rolling to make Tom's favorite, I had swollen hands the rest of the day and evening.  I suppose it was worth it because the food turned out wonderfully and the guys really enjoyed it. 

The Company of Others

It's always nice to know you are not alone.  A week ago a woman called me who has had Lupus for about 20 years.  She is a friend of a friend.  We talked for the longest time "comparing notes."  Her story is much like my story.  The medications she has taken over the years are the same ones I've been on.  About a year ago she started on Rituxan.  It was really good to share with someone in the same boat.  Not that we moaned and groaned, but that we helped to encourage each other as well!

The other day my son told me he was going to give my blog link to someone so they could pass it on to a person they know who has lupus.  I think there are people out there reading my blog, but no one leaves a comment or even mentions that they were here.  I am disappointed in that.

I continue to work out and feel that my time at the gym really helps keep my joints loose.  I am still on the organic diet, but it is getting to be a lot of work.  I am cooking two completely different meals most days:  one for me and one for my husband and son.  And there are times when I really want to have what they are having, but can't because it's not organic.  There may have to be some "modifications" to this business of going totally organic.  I wouldn't drink a diet soda or diet anything even if I was dehydrated!  I know the artificial sweeteners are JUST BAD, BAD, BAD!  I am avoiding additives and preservatives - I know how bad those are.

Heart

The results of the heart echo showed that I do have a leaky valve, but at this time there is no need for extra measures.  The blood pressure medication that I am on is perfect and I am to stay on it.

Went today to the Working Women's Survival Show.  This is an annual event for my daughter and me.  This year we took my daughter-in-law along.  I am so glad that I am feeling pretty good, because we walked SO MUCH!  Had a great time!  Really enjoyed the day.  When I got home, I immediately took a nap.  I was very tired and my legs hurt.  I slept an hour.  I really have to say it was a fun day!

No Tear

Saw the shoulder specialist yesterday morning & I have no tear in the shoulder!  She could see the calcification deposits on the x-rays and was sorry that I had such an awfully painful and long lasting Lupus flare.  But that's exactly what it was - a Lupus flare.  Although the pain was severe, there is no tear. 

I am ready to move forward now.

The Strange Workings of Lupus

Woke up yesterday morning able to move the right arm almost any which way very easily!  Lupus is so strange - it will take hold of a joint and not let got until it is good and ready to let go.  After all these weeks of tremendous pain, it finally let go of me.  I hope it lasts for a good long while!

It was such fun to be able to hang things in the closet with my right arm.  I had to show Tom, "Oh, look at this!"  I was on such a high all day at work.  So happy to not be hurting.  When I got off work and went home, I quickly changed into some jeans and got my gardening gloves and clippers and set out to work in my landscaping.  It felt wonderful to be able to do things I hadn't for so long.

Oh, that Lupus is a strange one...............

Visit Primary Care Physician

Yesterday my shoulder hurt more.  It had been getting better.  Maybe doing the gentle yoga was too much for this week.  This morning I could barely do my hair - it took great contortions to get my right arm to go up.

This afternoon I saw my primary care physician who said the last time I saw him (several months ago), he heard the murmur.  He had noted it in my chart and was going to recheck me on this when I came back in July.  I am to have an echo test of the heart on Friday afternoon.  The echo will show exactly what's going on.

Moving Right Along

By the end of the day after my workout Wednesday, I felt achy.  My son reminded me I would probably feel worse the next day!  He was right!  I hurt all over.  I forced myself to go to my scheduled workout Friday morning, but we took it slowly and eased things up a bit.  My trainer could tell I was walking better by the time our session was over and I felt better as well.  I was so exhausted at the end of Friday after babysitting my little grandson.  That night I hurt all over, but especially in my right shoulder, hip and ankle.  The pain in my ankle had me in tears and sitting up in bed rubbing my leg.

My husband urged me to try to do my "gentle yoga" this morning.  I really didn't think I would be able to do it and I have to admit it was the worst I've ever done.  But I did what I could and had to sort of be extra gentle with the right side stretches.

I did take a half hour nap this afternoon which helped me to feel a bit more alert. 

Since my rhuematologist found I have a heart murmur which I did not have before, I will be seeing my primary care physician Monday afternoon.  I'm sure he will want me to see a cardiologist.

A New Trainer

I am not starting P.T.  After an evaluation at Physical Therapy, it was determined that I very gently start doing some exercises on my own.  It really didn't make sense to go through p.t. when I've been so many times before and know the exercises by heart.  I will do them.

Today I started back to working out at the gym.  I've missed several weeks having been in so much pain.  When I called to reschedule, I spoke with the owner of the gym who has a good understanding of Lupus.  Now he will be my trainer.  I feel good about this. 

Time - it's own relief

Ten days on pain killers.  Finally, two days without.  The right shoulder is starting to ease.  WOO-HOO!  I have never had a bout that lasted this long.  I don't like this at all.  Not fun.  There was nothing I could do about it, but wait it out.  Other bouts of pain in one location or another would be three days, four days, but never two weeks tomorrow.  I guess the doctor is right that my meds aren't working anymore.  Time for something different.

I am still doing the organic diet.  I do not notice even a bit of difference.  The food is delicious, albeit more expensive.  It's more work, because I am cooking for myself and also cooking for Tom and Matt.  But I said I would do it and I continue on.  Who knows?  Maybe I will see some sort of change eventually.  I know this is healthier.

My rhurematologist's office called me the other day to say how sorry they were that I can not get in to the shoulder specialist until the 22nd of Feb.  In the meantime Dr. wants me to go to physical therapy.  I've been to p.t. so many times, I could be a physical therapist.  I don't think physical therapists understand the mystery of Lupus.  I get the feeling when I walk in they are thinking "she's here again".  The nature of Lupus is that it moves from one joint to another. 

I had been doing a series of exercises every morning and evening until this most recent episode got so very bad.  Then I simply could not do the exercises.  Barely moving my right arm was excruciating.

Today I could almost completely dress myself.  In this cold weather, I have been wearing turtle necks almost exclusively.  It is impossible for me to get a turtle neck on these days.  Tom had to help me yet this morning.  I was able to do my own hair today and I consider that a great accomplishment!!  It was very painful and difficult, but I really pushed myself to do it. 

I start p.t. tomorrow.  I am sure they will push me a little.

I've been thinking lately about the fact that Tom & I usually take a winter vacation.  I like to get away from the cold.  We didn't make any plans this year.  And what do you know, but we are getting hit with several inches of snow every couple of days.  I really hate it.  My body doesn't tolerate it well.  On the other hand, if we had made advance travel plans, I'm not so sure we could have gone with me so sick.  There's no way I could have helped with luggage, I could barely carry my own purse.  I wasn't sleeping well for so many nights with this ungodly pain in my shoulder.  That wouldn't have been good for a vacation.  Seems things worked out for the best.

We did spend a huge chuck of change on a temper pedic bed.  It came when the pain had first started, so until these past two nights I haven't been a very good judge of it.  Now that I am doing without pain medication, I would say the bed is wonderful!  I am so glad we made this investment.  Spent vacation money for the bed, you might say.

I am disappointed with my blog.  I thought people would read it and post on it.  No one is posting.  I thought that when you created a blog, it was out there and people wanting to know more about Lupus or wanting to share their info on Lupus would post.  It isn't happening.  I'm not sure how to really "get it out there."

No Relief

My rhuematologist's office is closed due to the tremendous ice and snow storm.  When I spoke with the office yesterday, doc said he wanted to make certain there was no underlying conditions in the shoulder (such as a tear or injury) and so I should see a shoulder specialist.  I called to make that appointment and can not get in to see her until FEB. 22ND.  Oh please, that is just ridiculous!  I wanted to let my rhuematologist know this.  Maybe he will do something for me in the meantime.  Believe me I will be calling again tomorrow, but who knows if they will be open with the weather as it is.  As I wait, I am in pain.

On Thursday afternoon I had a prednisone injection in the rt. shoulder.  I was in so much pain by that time that I sobbed and told my doc. I was ready to do the Rituxan.  Being the wise doc. that he is, he told me "this is not how we make these decisions."  He told me to wait until Monday, then call him and let him know how I am doing and we would go from there.  He increased my prednisone through Monday to help me out.  Unfortunately, I don't feel as though the shot has worked or the increased prednisone is helping out.  I've never had instant relief with a prednisone shot.  Once it took 24 hours to kick in and another time 3 days.  So I am still hopeful that it will release this very painful rt. shoulder.

Yesterday I didn't even dress.  I stayed in my nightgown and robe all day because it was easier than trying to pull my pants up.  That is horribly painful.  Tom was babysitting at Sarah's and Matt was at work, so who would see me all day?  Today I had Tom help me dress in some very loose and comfortable workout wear.  And my shoulder is just a bit better in that I can touch my right ear with my right hand today!  Woo-Hoo!  This is getting darned boring.

I have to thank my son, Matt for all of his help with this blog.  He was my encouragement to start it.  When I can't figure out something with it, he has been my assistant!

Wednesday, January 26, 2011

Yesterday afternoon my right shoulder began hurting to beat the band.  Today I can barely move my right arm.  Washing my hair with one hand was not at all fun.  My husband could see I was in a bad way this morning so he helped me get dressed.  Tom was so patient with me this morning:  He held my arm up in the air and transferred comb and curling iron to me so I could do my hair without moving my right arm.  It was still painful, but we managed to laugh our way through it.  And it turned out looking quite good!!

I've called my rhuematologist about this intense pain & he is going to see me tomorrow afternoon to give me a cortisone injection in that shoulder to get me by.

He had given me an injection of cortisone in the left shoulder when I saw him last on Jan. 10th.  These cortisone injections are only temporary, but when in tremendous pain, they do help.

All of the information regarding Rituxan can be found at Rituxan.com under patient information.  I hurt like heck, but I would sure like to hold off with the Rituxan for a bit.

A Little History

Monday, January 24, 2011

After years of one health problem and another, I was diagnosed with Lupus & Sjogren's disease.  My husband & I were saddened to know that I had an autoimmune disease, but grateful to know what it was and that we could deal with it.  I had found a terrific rhuematologist who prescribed prednisone and plaquinil.  I was on these meds for some years, when he added methotrexate and took me off the plaquinil. 

I work out twice a week with a personal trainer and have been doing that since years before my diagnosis.  I added "gentle" yoga to my weekly routines about a year and a half ago.

Since late summer I've not been feeling very well.  I've had more bouts of pain than ever before and more days using a cane to aid in walking.  I ceased doing some hip exercises my doctor had recommended as they seemed to make the pain in my hip joint worse.  Each morning and evening I have a couple of shoulder exercises I do.  Just after the new year I got in to see my rhuematologist with my list of complaints.  He felt that my current meds were not working for me anymore.  To make a couple of weeks of a long story shorter, my doctor recommended that I go with the infusion drug Rituxan.  He told me all the possible side effects and scared the wits out of me.  One infusion is $10,000.00 and I would start with one and then two weeks later have another.  I'm not really certain about subsequent infusions.  I still have to talk more to my doctor about all of this.

In the meantime after talking with my husband and children, I have decided to try a month of "organics".  It started Saturday evening and I need all the encouragement possible to stay on track.  I want to see if going organic with all of my foods can make a significant difference in how I feel.  I've read many times, many places over the years that food additives, preservatives, chemicals, etc. trigger Lupus flares.  I know I can not use artificial sweeteners.  God, they are BAD!!!  They really make you hurt.  So this is a start.  I'm not quite ready for the Rituxan.

I have heard two good reviews of the Rituxan which have helped to ease my fears.  My massage therapist told me a couple of days ago that her father credits being alive with Rituxan.  He had non-Hodgkins lymphoma and was on it for 6 months.  He has been in remission for several years.  That's a good story.

My son, Adam, checked with a Doctor of Pharmacy who told him it is the closest thing to a "miracle" drug.  That's a good thing.

Last week Monday was a cane day.  Really painful.
Tuesday was a "slow walking with a limp" day.  Painful.
Not a day goes by without some pain in various places. 
I have dry eyes.  I use Restasis.  I have dry throat.  I have stomach problems due to the Sjogren's and how it drys you out.

If anyone knows anything about Lupus or Sjogren's, please share.  I don't currently belong to a support group, but would like to.