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

[Pumpkin]

Mimi,
Glad you are finally getting some answers. I hope you feel better with the prednisone.

 

[maryo52]

Mimi, you're so smart to have all your test results with you so you were able to get them to the rheum doc PDQ. I got to that point with my knee, have tried to coach my son to do the same but he's a has a way to go learning how to take charge. Nice they responded to the info you sent -- almost as if they're paying attention in that office.

My son sees a new neuro in two weeks. No one has yet taken a full history (!) The last neuro was what I call "asleep at the wheel."

 

[Mimi]

Maryo, I get a copy of everything that I ever have done medically.
Last year I had a call back for a mammogram. I have little faith in the place that did the original, but I went for the call back. They could not answer my questions, yet they ordered a sterotactic biopsy ( which is a big deal). So I said to the radiologist, just give me a copy of everything you have done here. He aid, "Oh you are going someplace else?" I said yes and I named the hospital and Dr. I was in the sonogram room when this occurred. I had just had an inconclusive sonogram. I was not shown any mammograms on the call back which is standard protocol.

Then she told me that last year she had a bad mammogram results at age 32. She searched for a Dr. and found my DR. He is 3 hours away and she works for another hospital! Well, she had a double mastectomy with reconstruction and is cancer free and very happy with everything done. Her hospital was only going to do a lumpectomy and radiation. She had they type of cancer that would affect both breasts.

I went to the Dr. and the very first thing he said to me, after reading the 3 years of mammograms that I gave him, was that I did NOT need a steriotactic biopsy...I did NOT need any biopsy!!! He then showed me all of the mammograms and there were no problems. needless to day , I go 3 hours for good medical care from him.

 

[Mimi]

Yes, Maryo, they are really paying attention. My smart phone played a crucial roll in all of this! I sent the Dr. a pictorial history of my "dots". He showed the printouts to me and said that he was elated to get the technology that I sent from my phone. He said with an ANA of 640 and those pictures that he had to see me immediately!
Which he did. I was last patient of the day and he spent over an hour with me with full staff and the best flibitist I have ever seen ( I am a terrible draw with sick veins).
He also said that he feels that this has been present and working up for years. He said that I had a positive ANA (though a low one) in 2005 when I saw him. He did a full work up then and everything else was fine.

 

[busylizzie]

Mimi I have come to your thread to reply instead of hi-jacking Kubisee's thread. My rheumatologist has been my saviour with regards to my knee. However, since I have changed consultants and hospitals for my orthopedic care he has had to back off. It was him who organised my white cell scan and blood tests and helped me after my orginal surgeon told me to live with my knee as it is.

I saw an immunologist earlier this year, but she couldn't offer me any help. Apparently she had the wrong specialisation and said I needed I think it was a biochemist. Nothing has come of it.

 

[busylizzie]

I don't know anything about vasculitis caused by lupus. I don't know if I have had ANA testing. My rheumy diagnosed my fibromyalgia. I hope you get some relief soon .

 

[kneeper]

I haven't been checking in as much as usual lately and am just catching up with you. I'm so glad the rheumatologist is jumping into action--and that you gave him the info to get the ball rolling.

 

[Mimi]

I have been on the prednisone for 3 days now and last night I was wide awake till 5am!!! Has anyone been on this drug and has any hints on ever sleeping? I am very tired this morning and really need some rest. I hope to get a good nap later. My ankle and foot are still very red-purple and swollen. It is looking like a bad burn now.

 

[kneeper]

Yes, I had prednisone after a medication reaction once and I barely slept at first. Luckily they tapered me down quickly. The only thing I can say is nap when you can. Maybe Josephine will have some ideas.

 

[pdx]

Predisone will do that. Drink lots and lots and lots of water. That should help.

 

[Josephine]

I think to two - being unable to sleep and the increase of symptoms - are co-incidental and unrelated.

 

[maryo52]

Wow. I assume you've checked in with your doc about your current status.

 

[Mimi]

Maryo he saw it on Wed. and it was much worse than this. It was very swollen and bright red and huge on both sides of the ankle.
It really is getting better. These red things have a life of their own that lasts about a week. The first 2-3 days they are hot and burn like a bad sunburn. They go from red to purple to almost light brown. Right now there is a circle around my ankle that is lighter as the outbreak moves to the top and bottom of the ring. Just very weird!

 

[maryo52]

Whew! Glad things are improving. I had to take prednisone for three days, no taper. The day after the last pill I felt horribly depressed, purely physiological. I'm sure you'll be tapered carefully. Continued good luck.

 

[Mimi]

Maryo, I see him next Wed. and he said he will evaluate the prednisone and probably reduce it. He also said that I will move to another drug to suppress the auto immune response, once the inflammation goes down. I think that drug started with an A but, I am not sure, I asked how long will it take. He said he would like to have me off this and on the other drug by Thanksgiving.

 

[Dhare63]

My goodness Mimi, I missed a lot in a few days. I really hope you are on the way to a diagnosis and treatment to make you well. It sounds pretty scary.

Please keep us posted! Praying for you!

Dawn

 

[Mimi]

Thanks Dawn, you have been here for a long time too. Nice to have support from old friends. I never thought it would ever come to something like this. I know I am in for a very long battle with all of this. I am not happy about all the drugs. I do not tolerate drugs well anyhow. So this will be an all out fight. The prednisone is taking its toll already and I will have to be on it for some time. No sleep at all is horrible because this condition is sapping all my energy ! Then on to the next drug that comes with even more side effects.

All this comes when things were finally coming together and I gained more ROM and the knee was great. Thankfully, my knee is still pain free and doing well. What will happen next, I haven't got a clue!

 

[Dhare63]

You and your family are strong, you will kick this. It may be a great challenge though and that's where you need to lean on your support system. I know you are used to being the strong one but make sure you let others help when needed.

Be well dear friend, and stay in touch!

Dawn

 

[Mimi]

Thanks Dawn, this is a huge challenge that I did not see coming. However, it is very present and needs my constant attention. As I sit here, I am drinking my first glass of water for the day and eating my healthy high protein, low salt, low carb breakfast!

Never thought "staying well" would involve so much work. The prednisome pills are the most "bitter pills" I have ever taken, literally and figuratively! I am most thankful for almond chocolate milk...little bit of sugar helps the medicine go down.

I had to cancel my PT for my knee last week due to the horrible swelling in my ankle. But it is back to "normal" and I will be there tomorrow. I will not let this stop the progress I have finally made in gaining the ROM I need.

 

[Dhare63]

Sounds at least a little more positive, but I know you will be in for it! Just hang in there!

Dawn