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Suggest Treatment For Damage To Joints Caused After Stem Cell Transplant

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Posted on Tue, 2 Sep 2014
Question: **** PLEASE ANSWER THIS QUESTION ONLY IF YOU ARE AN IMMUNOLOGIST EXPERIENCED WITH AUTOIMMUNE CONDITIONS ****

I had cord matrix stem cells (derived from umbilical cords) administered in Mexico one year ago. I developed a reaction which caused damage to all my body tissues (muscles, tissues, cartilage, bones etc). All of my joints have been affected. Since then, I have been undergoing adipose tissue stem cell therapy in an attempt to combat this condition. Please advise what tests can be run to confirm that (A) There is an autoimmune condition present in my body and (B) To identify that condition so that it can be treated using the appropriated protocols

Please note that prior to the first stem cell treatment, I was already hypothyroid (hashimoto) and had just started developing osteoarthritis.

Also please note, my stem cell doctor has said that my symptoms resemble those of patients whose silicone breast implants leaked.
doctor
Answered by Dr. Naval Mendiratta (17 hours later)
Brief Answer:
? Autoimmune condition

Detailed Answer:
Good evening XXXXXXX Well the condition you are describing looks like a graft versus host reaction. Sometime the body doesn't accept the foreign or even self cells or organ transplanted from outside. What i need to know here is:

1. Why was the stem cell transplant done in the first place. Like what condition you had that they did a transplant.

2. Which all joints are affected. Do you experience swelling of the joints as well?DO you have early morning stiffness .?

3.when are the joint pains more. When u work or when you are resting?

4. how are the other organs now.

5. Any skin rashes/dry eyes/dry mouth?

I am not too convinced here about the adipose cell transplant to increase your immunity. If your joints are getting affected probably your immune system is hyper activated. But yes i do want to know the pattern of joint involvement and the other things i asked to distinguish it between inflammatory or mechanical joint pains

Also get your Anti Nuclear Antibody( ANA) , Rheumatoid Factor( RF)done, ESR and CRP done.. That will give us a clue whether it is an autoimmune problem or not.

Hope the information was useful. Looking forward to your reply so we can help reach a conclusion.
Above answer was peer-reviewed by : Dr. Vaishalee Punj
doctor
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Follow up: Dr. Naval Mendiratta (4 hours later)
Thank-you for your very prompt response.

Here are my responses to your questions.

1. The original condition being treated was both knees where I had meniscus tears, and I was at the beginning stages of arthritis in the knees. I also had issues with neuropathy - regular sensation of electric shocks throughout my body. My neck and back both have several bulging discs each so these might have been involved in neuropathy. Lastly, I am hypothyroid. The doctor told me that his therapy was better than adipose tissue and would result in improvement for all of my concerns. Please note that the doctor injected the cells directly into my thyroid, which I am told by other specialists is a serious error.

2. All the joints in my body were affected. All the ligaments became weak and I felt that the joints are not tied down properly, everything shakes out of place. Most muscles in the body were affected, many of my hip muscles literally disappeared and I could feel the bone beneath me, it was very painful. In my torso, the muscles collapsed so I could not raise myself. In my left leg, one muscle was so severely affected that I began to limp. I had the sensation that the muscles in my lower leg had turned into small deflated balloons, these were restored after adipose cell treatment. The cartilage in my knees almost vanished. My toes and arches were severely affected and it hurt to move. The muscles in my hands were severely affected, the fingers started hurting, there were clicking and popping sounds. Some of the bones running from the wrist to the knuckles degenerated so that a single bone looked like it had split into two bones at the halfway mark. There was loss of bone at the elbow. There were popping noises and pain in the shoulder, definitely felt like weak ligaments. There was popping of all joints in the spine. Ligaments, muscles in the back area were severely affected. I believe that the bones in my lower leg have lost bone mass.

I do experience stiffness in my joints.

3. The stem cell treatments helped the pain. I feel pain whenever degeneration is active, and degeneration seems to get activated whenever my thyroid moves out of .8 to 2.0 range. Due to my condition, mobility has been limited to only mandatory activities. I am lying down most of the time.

4. I have not noticed anything with organs. My stomach makes a lot of gurgling noises 24x7. I am not sure what is causing that.

5. No dryness or anything in mouth or eyes, no rashes on skin.

I will send you my blood test results by Friday. Please feel free to ask additional clarification questions, I do realize that I have not answered everything directly.

Hello again, I have additional information that I would like to provide. The additional information is to relate that my thyroid condition is also involved in the degeneration process and seems to be a complicating factor in what is happening. I am hypothyroid and take synthroid for this. The combined stem cell and thyroid background are below. My immediate concerns now are with:
A- The lack of improvement of TSH readings to changes in medication doses
B- Diagnosing the underlying autoimmune condition triggering all of this
**NOTE: The degeneration process is again underway in my body and hence the urgency.

STEM CELL & THYROID HISTORY
I had a stem cell transplant of umbilical cord matrix cells in September 2013 following which my thyroid went out of balance and I developed a condition which knocked out my muscles, cartilage, ligaments and in some places bone. To combat the condition, I went for stem cell treatments using cells from my own body. We realized that a thyroid imbalance was involved in the rapid degeneration and that it was vital to keep TSH levels between 1 and 2 for stability of my system.

I received the first stem cell treatment using my own tissues in January, 2014. From this therapy, I learned that it is vitally important to monitor the thyroid frequently and to make adjustments to medication quickly to prevent further degeneration. I also learned that my TSH readings are affected almost instantly when changes are made to medication. It appeared that I was hypersensitive to new doses of medication.

I received stem cells on XXXXXXX 6 after firstly fully stabilizing my thyroid. However, the thyroid started showing signs of being out of control at the beginning of August. I received another stem cell infusion on August 7 (from cultured / expanded adipose tissue cells) following which TSH level readings have continued to rise despite making adjustment to medication to bring it in line. It seems that now my body has become insensitive to medication changes.

The following are my thyroid readings between XXXXXXX and August. Problems started around July 29. Please advise why my thyroid readings are not improving as I increase my thyroid dosage.
XXXXXXX 7 – Dose 88 mcg, TSH 1.76 XXXXXXX 18 – Dose 88 mcg, TSH 1.8, Free T4 17, Free T3 3.4
July 2 – Dose 88 mcg, TSH 0.8, Free T4 22, Free T3 3.1
July 16 – TSH 0.73, Free T4 19, Free T3 3.8, dose of 75 mcg from July 5 to July 16
July 29 – TSH 2.22, Free T4 18, Free T3 3.1, dose of 75 mcg between July 17 and July 20.
Changed to dose of 62 mcg July 21 to July 26. Changed dose to 50 mcg July 27 to July 29.
(Reasons for dose changes: The change of dose on July 21 was made due to the thyroid readings indicating change was necessary to bring readings back between 1 and 2. The change of dose on July 27 was done because cartilage on knees was degenerating despite the presence of stem cells.)
August 2 – TSH 3.7, dose of 50 mcg from July 30th to August 1. Dose of 75 mcg started on August 2.

August 7 – Dose of 75 mcg from August 2 to August 6, TSH 5.38 , free T3 below lab range. Free T4 within lower end of lab range, dose changed to 125 mcg on August 7 upon receiving results.

August 10 – TSH 6.53, free T4 12.6, dose 125 mcg August 7, 100 mcg on August 8 and 9, switched dose 150 mcg on August 10 after seeing results.
doctor
Answered by Dr. Naval Mendiratta (35 hours later)
Brief Answer:
? Autoimmune

Detailed Answer:
Good evening XXXXXXX Sorry for a bit delayed reply. Got a bit caught up in my hospital Work.

I read through your history. From what it seems like, you have had a severe reaction to the stem cell treatment. Stem cell treatment is still under research especially for cartilage regeneration. How much it helps in the long run, is just still under query. But yes, one thing i would recommend you is to stop all the transplants adipose or not. If they are affecting you that bad, it is less likely that any more transplants can increase your immunity.

Dont panic. You should consult an immunologist. Let him/her examine you and see where exactly is the degeneration. It is a bit hard for me to tell what exactly is happening in your bones and ligaments at the moment, but if stem cell is causing side effects you might as well stop it and give time to your body to regenerate itself.

As for thyroid fluctuation, it is not too bad. As long as it is kept under 5, you should maintain the same dose. even 6.5 is not too bad cause thyroid levels will fluctuate if your body is going through any form of stress or other problems.

For now, we should try and sort out your current issue of joints. Once that is in control, thyroid levels will get under control as well

Get an ANA, Rheumatoid Factor, ENA Profile done. That will give us a clue which autoimmune condition is underlying or has some autoimmune condition been triggered by the theraphy.

Hope the information was useful. Do let me know if any other concerns. Will be glad to help you out
Note: For further information on diet changes to reduce allergy symptoms or to boost your immunity, Ask here.

Above answer was peer-reviewed by : Dr. Bhagyalaxmi Nalaparaju
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Answered by
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Dr. Naval Mendiratta

Rheumatologist

Practicing since :2007

Answered : 754 Questions

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Suggest Treatment For Damage To Joints Caused After Stem Cell Transplant

Brief Answer: ? Autoimmune condition Detailed Answer: Good evening XXXXXXX Well the condition you are describing looks like a graft versus host reaction. Sometime the body doesn't accept the foreign or even self cells or organ transplanted from outside. What i need to know here is: 1. Why was the stem cell transplant done in the first place. Like what condition you had that they did a transplant. 2. Which all joints are affected. Do you experience swelling of the joints as well?DO you have early morning stiffness .? 3.when are the joint pains more. When u work or when you are resting? 4. how are the other organs now. 5. Any skin rashes/dry eyes/dry mouth? I am not too convinced here about the adipose cell transplant to increase your immunity. If your joints are getting affected probably your immune system is hyper activated. But yes i do want to know the pattern of joint involvement and the other things i asked to distinguish it between inflammatory or mechanical joint pains Also get your Anti Nuclear Antibody( ANA) , Rheumatoid Factor( RF)done, ESR and CRP done.. That will give us a clue whether it is an autoimmune problem or not. Hope the information was useful. Looking forward to your reply so we can help reach a conclusion.