TKR Red dots...Do I have an allergy to my TKR??

[Mimi]

@Jacky48 , thanks for your caring thoughts. It has been a wild 6 months for me for sure! As for the vasculitis since it isn't really a rash but a "condition" caused by an autoimmune disease, I will always have both of these lovely
" ugly twin sisters". Vasculitis by definition is " is an inflammation of your blood vessels. Vasculitis causes changes in the walls of your blood vessels, including thickening, weakening, narrowing and scarring." Mine is chronic and severe at this time. The hope is to get it to calm down and for the Lupus to stop attacking my blood system. I have
"systemic lupus erythematosus", or “SLE.” Systemic lupus is so-named because it affects many different organ systems in the body. It is marked by chronic inflammation, especially of the kidneys, joints, and skin. The cardiovascular and nervous systems can also be affected. It is also affecting the nerves in my feet and I feel that my bout of carpel tunnel that appeared out of nowhere last year to be severe within a month was the Lupus.

I saw the Dr.last Monday and my legs look the best they have been since this all started. He was delighted and so was I. He lowered my prednisone to 12 and 1/2. Well that lasted all of 2 days!! On Thursday morning I was covered in large and small red raised ugly purpura (small red or purple discolorations caused by leaking of blood vessels just underneath the skin) . By the afternoon they had grown quite large . I called the Dr. and he upped the prednisone to 15 again. So I call him tomorrow and send pictures of the day to him and we shall see. This disease has no cure and I am beginning to think that there is not real control. I feel that maintaining it is a more realistic goal.

 

[kneeper]

hang in there. It sounds like the doc is watching you closely which is good.

 

[Jacky48]

Oh Mimi, I'm so sorry that you're having to go through all this. (((HUGS))) I hope to god it settles itself soon and you can have some sort of comfort.Stay strong my friend, and please keep us updated!

 

[Mimi]

I called the Dr. this morning with a report on my legs. Thankfully, they have stopped the outbreak that started on Thursday. So my Christmas gift is to lower the prednisone to 12 and 1/2 . I hope this keeps the outbreak down and that I can continue to lower the prednisome .

Wishing all my Bonesmart friends a very Merry Christmas! :mer xm::nativity:

 

[referee54]

WE will keep you in our thoughts and prayers---not only for a Merry Christmas, but for an ending of this ordeal that you have had to go through!

 

[Jacky48]

Oh Mimi, that is such good news lets just hope it continues to diminish and the prednisone doses continues to be lowered. :mer xm: My BoneSmartie friend!

 

[Mimi]

Good news!!! I have not seen any new "dots" for a few days now. The outbreak has settled down. Next week I will see if I can lower the prednisone by another 2 and 1/2. I hope so. Perhaps the immunosurppressant (Imuran) is kicking in and helping or the Plaquenil has started to work.

Wishing all you Bonesmarties a very happy New Year!

 

[Jacky48]

Oh I so hope you find relief Mimi! You've been through one heck of a trial in life! I certainly wish you the best in the year 2014 my BoneSmartie friend!

 

[kneeper]

Good news. Let's hope the meds are kicking in!

 

[Mimi]

The vasculitis continues to improve with only very small red dots appearing infrequently. That is the good news.

However, today I went to the eye Dr. at little earlier than I anticipated. My left eye has been bothering me. I had shingles in that eye in 2004 and it has bothered me ever since. I use Restasis twice a day and atrificial tears often. But nothing is helping the feeling that something is in my eye and the dryness. The Dr. saw a big change in my eye pressure since the first week in October. So he did a retina scan and found that my optic nerve has changed a good bit since the last time a scan was done. The steroid ( prednisone) can cause this change. Since I have no idea when i will go off the prednisone, he put me on meds. He said that this is glaucoma, and I will now add the latanoprost drop each day.

 

[Jacky48]

Mimi, first I'm happy to hear that the red spot are backing off!
My daughter (40 years old) just got the news that she had signs of glaucoma a couple of weeks ago and went for further tests (her grandmother, Norm's mom had glaucoma since her early 60's) and I told her her grandma took eye drops for many years and lived until she was 92, and all she had done was cataract surgery, but she never lost her eyesight. So I guess what I'm saying is, try not to stress over this new development, just like knee and hip replacement, the medical field has come a long way! Trust it! I wish you the best in this new year, in health and happiness! (((HUGS)))

 

[Mimi]

Thanks Jacky for the well wishes. It has been a crazy 6 months of not knowing and now knowing too much! I have always been a very healthy woman that has taken really good care of myself. I eat a healthy diet, my regular blood work is still just as it should be and all normal. But the special blood work for the immune system and inflammation is out of bounds big time.

Now my eyes. Mine is related to the Prednisome. It changed very fast as soon as I went on it. That scares me cause I will be on it for a long time. And the other drugs can do harm to the eyes too.

Do you like my crazy avatar?? It is the face of LUPUS!! Thought it was apropos for me.
Your new Mickey and Minnie is really cute.

 

[Jacky48]

Yes Mimi, I love your avatar very much, but not the decease for sure! A very fitting avatar for you, sad as that is.

It's amazing what life hands us on a silver platter, as we age, when we didn't even ask for it!

I thought my new avatar was apropos for my new knees and their name sake, I'm glad you like it.

 

[kneeper]

Well, hopefully as the other meds kick in you can decrease the pred.

 

[Mimi]

The Dr. lowered my prednisone another 2 1/2 to 10mg! Yea!!!! Took it yesterday for the first time and only saw a few tiny dots today, no major change. Hope it stays this way and I can continue to lower it. I realize that lowering this medication is tricky and will take awhile. But I am happy to lower any of it!

 

[kneeper]

Exactly. It may take a bit of tinkering. Fingers crossed for you.

 

[tennis bum]

MIMI... can you ref a doctor at John Hopkins. I live in NOVA and have tested postive to nickel reaction. I was scheduled for my 3rd RTKP in mid Jan. This was canceled upon review of blood work and knee composite. Blood work (MIL from Ill.) states I don't react to titinium. The 2nd knee is 100% titiunium (3-5% alloys). Allegry test have been negative so far. New patch tests are pending. Knee is red, swollen, hot..etc. thanks!

 

[Minnie's knees]

Mimi, I am new to bonesmart and just found your thread. I am so sorry for what you have been going through. But so glad you have a great dr. and things are moving forward. I have Rheumatoid Arthritis and my daughter has fibromyalgia. I never realized that autoimmune diseases can manifest in so many different ways and that there are so many. Thanks for posting your journey as it may also help others and I wish you the best.

 

[Mimi]

@tennis bum, I can't refer you to a Hopkins Dr. I did not have my knee done there as I live on the Eastern Shore. My daughter had open heart surgery at Hopkins a year and a half ago. She found her Dr. by going to the Johns Hopkins web site. She found an excellent aortic specialist and she sailed through her surgery, which was for a very rare condition and the surgery had only been done 6 times at Hopkins. That place is unbelievable and the area she was in was brand new and state of the art technology. Also, you need to be referred by your Dr. to get an appointment with a Dr. at Hopkins. My daughter had a problem and went to the Hopkins emergency room and after some blood work and tests, they referred her to a Hopkins Dr. She then requested her Dr. because she had done her research prior to the emergency room visit. She was able to see him in a week.

Good Luck

 

[Mimi]

Things are moving along. My prednisone has been lowered to 7 1/2 and the results are good. The red dots are very few and they stay small. However, somehow I must have banged the side of my leg and I have the weirdest "bruise" on my leg. It is a circular scab with a very red circle surrounding it. It is not warm or swollen, just very red. I think it is the vasculitis reacting to the "attack" of a bruise. After all my body is at war with my vascular system and looks at any bruise as an attack. As long as it does not change, It is good.

I have biweekly blood tests because of all the meds I take. Yesterday it took 4 people to get a drop of blood out of these "turnip" veins. My white blood count is low and the immunosuppressant has finally started to work. That is good and bad. No immune system working in the height of the flu and germ season. I am trying to be very careful in crowds ( trying to avoid them) and around kids. That is hard with my 4 under 5 years old grandkids. So far so good.