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

[kneeper]

Sorry about the tough blood draw but good that the pred seems to be working and has been lowered a bit. Yes, definitely be careful to protect yourself from germs. And eat healthy and get enough sleep. I find lack of enough sleep really lowers my resistance.

 

[Dhare63]

Hi Mimi, sorry I missed catching up with you. I think of you often and hope the issues start to subside. I would stress over the glaucoma, but it sounds as if your team in on top of this.

I work as a financial planner and have many docs as clients. After having my thyroid removed and still struggling with getting it regulated, I told my gp that I would much rather the docs were visiting me in my office rather than me in theirs!

Here's to stamina and refusal to accept a less than stellar outcome. Stay strong my friend!

Dawn

 

[Mimi]

Dawn, for some reason I am not stressing over the glaucoma. I guess it is because the Lupus and vasculitis can kill me and to me that is stressful.Lupus is a strange disease. Like cancer it takes many forms. It depends on what organ the Lupus chooses to attack. In my case it is the vascular system and that is my blood. Pretty important part of the human body! There is no cure as there is in some cancers and there is no remission, just time between "flairs" that are somewhat controlled by drugs.The imunosuppressant is a cytoxin derivative. The other drug is the anti malaria drug that works for Lupus and they don't know how. And the wonderful miracle drug, prednisone! Prednisone is both a miracle and a curse. The side affects are horrible, It changes your entire body and how you look and feel. I think that is why the logo for Lupus is "Solve the Cruel Mystery". When I first saw that I thought it was strange. However, it could not be more true to the disease.

It is estimated that 1.5 million Americans have some form of Lupus. No two cases are alike and diagnosis can take years. I was lucky that my vasculitis presented itself so clearly and my blood work was "classic" to Lupus. I got an immediate diagnosis. Another thing about Lupus, in women it occurs in 20 per 100,000. Vasculitis occurs in 20 per million. So it is fairly rare. You do not hear about drives for Lupus and it gets very little funding and research. The Lupus foundation of America is only 10 years old. Their site has information about this little known disease, www.lupus.org .

 

[Dhare63]

Thanks for the education. I have known a few people with Lupus,but never really understood the disease. I hope you are able to control it best as possible. Just know your friends are here for you!

Be well,

Dawn

 

[Mimi]

I saw my Dr. today and he was very pleased with my progress. I have not had a flair since Dec. and that is good. He is very slowly lowering my prednisone. This needs to be done carefully as my adrenals are not functioning normally with the prednisone if you stop the drug it could be fatal. So it is a slow decrease of the drug. Mine will take 7 months or more from this month. I have come down from a high of 40mg. in October to 7mg now. I would like to get off of it but that may not happen if I flair again. I am still on an immunosupressant and the anti malaria drug. I will be on them forever! I still have to try and stay well. With a suppressed immune system that is hard, cause my four grandkids are all under the age of 5! So far so good!

And the best news for me was that I only have to have blood tests done once a month! Every week has taken its toll on my already poor weak veins. It has been a long six months since my diagnosis but I am finally seeing improvement and getting adjusted to my "new normal".

 

[1ELISEA]

Excellent report Mimi.
Sounds like things are coming together for you and congratulations that you are seeing improvement.
Thank you for sharing with us your good news!

 

[Dhare63]

Wonderful report Mimi, glad you can stretch out the blood draws. I hope the news keeps getting better for you with each visit.

Your persistence and great attitude have served you well. Congrats and stay in touch! It always brings a smile to my face when I read your posts!

Cheers,

Dawn

 

[Mimi]

One thing I haven't mentioned through all of this auto immune journey is my knee!! This all started last June when I was in PT to help gain some much needed ROM in my TKR knee. My first day, as I walked in, my therapist yelled from across the room,"WHAT IS ON THE BACK OF YOUR KNEE??"

I turned my leg and saw bright red scratches behind my knee. She asked me what I did and I had to think. The night before I had a very itchy space behind my knee and I scratched it. I did not scratch it hard or much. So the marks I had were out of the range of "normal"

What was happening all summer, was that I was having hives and when I scratched them I got these blood red marks. Then in July the red dots came and then purple swelling.

So my PT brought it to my attention. During that time I did gain 13 degrees of flexion and finally, after 2 years, lost the concrete feeling in my knee. I have been able to keep that new ROM and my knee is pain free and has been terrific through all of this journey. The prednisone, Imuran and Plaquenil have had a lot of side effects, but nothing has hampered my knee at all. Thank goodness. I do not know what I would have done if this disease had a negative effect on my knee!!

 

[kneeper]

So good the hear your knee is doing well and you are doing well enough with the lupus to be decreasing the pred.

 

[Mimi]

I saw my Dr. this week and for the first time he was totally open about my condition. He said that when he saw me for the first time 8 months ago, that he never thought I would be doing so well now. He said that I had the most serious case of vasculitis due to Lupus that he had treated in his 30 year practice. He also said that the 3 medicines I am on are only given to the most serious cases. The best news was that I will come off of prednisone in October. I am down to 5 mg. now from a high of 40mg. I will continue to be on Imuran an immunosuppresant and Plaquenil an anti malaria drug that will take over for the prednisone. I have been on the Plaquenil since the beginning, but it takes 6-8 months for it to start working. He said it has kicked in and that allowes me to get off prednisone. Oh I am so thankful for that!!!

Why did he wait so long to give me the "whole truth" of my condition? i think I wasn't ready to hear all of this on the day of diagnosis and the months since. I have had many nasty side affects of these drugs. Now my main problems are being tired and gastro problems. I will take that cause it sure beats the alternative!

 

[Dhare63]

Hi Mimi,

It's great to hear from you and good progress report! It's wonderful that you are recovering so well in spite of his initial thinking. I imagine it's a bit unnerving to hear his true feelings, but I'm glad you have responded so well and I bet he is thrilled!

Congrats and keep up the good work. Hopefully the rest of the problems will abate over time. How's the knee? How's the family?

Good to see an old friend!

Be well,

Dawn

 

[Pumpkin]

Mimi,
Good to see you doing so well with your lupis, and that you have a new knee you do not even think about.

 

[skigirl]

Mimi, I take plaquenil for Sjorgren's--but I am lucky only take 100 mg per day. It is a strong drug--I have side effects with even that low dose.

 

[Mimi]

@skigirl , I don't know your side effects, but I did some research on Plaquenil and found that if you take the true drug, not the generic, that there are less side effects. My drugs were added one at a time and spread over weeks and my gastro problems were present before the Plaquenil. My Dr. said that often with generics there are fillers in them and that the fillers cause the side effects. As far as cost, it is $20 more for a 3 month supply with my insurance. My dosage is higher than yours, I take 200MG twice a day and it has been fine. I am thankful that it is working and that I am not having side effects from that one.

 

[maryo52]

Just wondering about the effect of this long-term prednisone on your bone health. I suppose that you have to be super careful about fall prevent. I have a friend with some obscure auto-immune disease for whom this was an issue.

 

[Mimi]

@maryo52 , yes it is a problem and I have had a parathyroid tumor removed in 2000 ( I only get the weird rare stuff!!). That caused too much calcium but that is just as harmful as too little calcium. Also I have a problem with the fosomax type meds. So I take the d3 and calcium and get my scans.
I am lucky that my Rheumatologist has a speciality in osteoporosis. He has the latest programs that detect problems early and clearly. He is watching my bones carefully.
One major reason to get off of the prednisone is my bones. On day one he gave me the full plan for getting off the drug before I had taken my first pill. Thankfully, it has worked out and I will be off soon. I call it a miracle-curse drug!!

 

[maryo52]

Mimi, I'm so happy you are getting such comprehensive care and monitoring. I used to work as a paramedic, and I was puzzled by someone (my friend) who had severe pain after a small fall in her place of work. When we moved her I could feel that her femur was broken, and a few months later she was shopping in the store when the other broke! I know the meds are dreadful -- "miracle-curse" is a great term!

 

[kneeper]

I'm happy for you, mimi! Yay for being near to getting off the pred. I'm glad the plaquenil is working for you with no side effects. I've been on it for years and (knock wood) have had no problems--but I still get regular eye checks.

 

[skigirl]

I also have a wonderful rheumatologist!! Mostly I am getting problems with gas!! I never thought about the generic situation.

 

[Mimi]

@Dhare63, thanks for asking about my knee and family. My knee has been terrific through all of this. The meds have not caused any problems with my knee. I have bee totally pain free for over 2 years now. I work on the ROM and may go back to PT for some heavy duty work. Today my husband and I took our new Carolina Skiff out in the Bay and I got on and off the boat with no problems. Not having to worry about a knee is delightful!!!

As for the family, we are growing by leaps and bounds. Any day now, my youngest daughter (age 30) is having a little girl. She is the one that had open heart surgery 2 years ago. She has had a very good pregnancy and looks and feels great.Today was her due date so we are ready to go! That will be 5 grandbabies under the age of 5. When our oldest turns 6 in Nov. we will have 6 grandbabies under the age of 6 in Dec. My oldest daughter is having her 3rd!