Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
Suggest Ways To Wean Off Mycophenolate Mofetil
Question: Dear dr Naval
hope u r doing fine. I am once again in a position seeking your advice. I might bother u with some crazy questions please do not be irritated.
It goes like this. You know my sons history. He has LUPUS. The treatment given to him from 2013 to 2015 was not the best which I can realise now. We got a renal biopsy done in 2015 XXXXXXX indicating class III Lupus. We increased the steroid to 40 mg as per his weight and also added mmf steroid sparing drug by 2 gm. We stepped down steroid and stopped it this October. The mmf (MICOPHENOLATE) is in 1.5gm now. My son is fine at the moment. Which means his urine protein creat ratio was 90 to 120 as last measured in Sep end. This was 3200 in XXXXXXX 2015. we keep an eye on the froath, which is fine. His energy level and appetite is absolutly normal. I have 2 question
1. what will happen if we step down mmf at a faster rate and stop it?
2. He takes a drug called HCQS 200 ( Hydrochloroquine) one daily, which he has been asked to for rest of his life. We were toled that this is for joint pain, which he had when all this started in 2013. What will happen if this drug is stopped?
With due regards to all . There is a reason why I am asking u this.
I will explain u in my next message. But believe me these r just question and I have not implemented any of these.
XXXX
hope u r doing fine. I am once again in a position seeking your advice. I might bother u with some crazy questions please do not be irritated.
It goes like this. You know my sons history. He has LUPUS. The treatment given to him from 2013 to 2015 was not the best which I can realise now. We got a renal biopsy done in 2015 XXXXXXX indicating class III Lupus. We increased the steroid to 40 mg as per his weight and also added mmf steroid sparing drug by 2 gm. We stepped down steroid and stopped it this October. The mmf (MICOPHENOLATE) is in 1.5gm now. My son is fine at the moment. Which means his urine protein creat ratio was 90 to 120 as last measured in Sep end. This was 3200 in XXXXXXX 2015. we keep an eye on the froath, which is fine. His energy level and appetite is absolutly normal. I have 2 question
1. what will happen if we step down mmf at a faster rate and stop it?
2. He takes a drug called HCQS 200 ( Hydrochloroquine) one daily, which he has been asked to for rest of his life. We were toled that this is for joint pain, which he had when all this started in 2013. What will happen if this drug is stopped?
With due regards to all . There is a reason why I am asking u this.
I will explain u in my next message. But believe me these r just question and I have not implemented any of these.
XXXX
Brief Answer:
Treatment options
Detailed Answer:
good morning XXXX
Hope you are doing well and good to know your son is keeping well..
Well as for the treatment, it s a good thing he s is off steroids. pertaining to your queries:
1. class 3 lupus nephritis is not a very good biopsy finding. Class 3 and 4 both have a high relapse rate once treatment is stopped. We did have a patient recently who stopped all treatment after being in remission for a while and now her kidneys are totally damaged...she was also 14 year old. so recommended it at least 2 years of treatment with remission being there for at least 6 months and then reduce it to minimum possible dose
2. As for HCQs, it is not only for joint pains.. it Is for lupus as well. it keeps the overall lupus in check and prevents further conversion. Some people do good on just Hcqs as well...
It does sound the weird the way you have asked these questions. I hope I have answered your query
regards.
Dr naval
Treatment options
Detailed Answer:
good morning XXXX
Hope you are doing well and good to know your son is keeping well..
Well as for the treatment, it s a good thing he s is off steroids. pertaining to your queries:
1. class 3 lupus nephritis is not a very good biopsy finding. Class 3 and 4 both have a high relapse rate once treatment is stopped. We did have a patient recently who stopped all treatment after being in remission for a while and now her kidneys are totally damaged...she was also 14 year old. so recommended it at least 2 years of treatment with remission being there for at least 6 months and then reduce it to minimum possible dose
2. As for HCQs, it is not only for joint pains.. it Is for lupus as well. it keeps the overall lupus in check and prevents further conversion. Some people do good on just Hcqs as well...
It does sound the weird the way you have asked these questions. I hope I have answered your query
regards.
Dr naval
Above answer was peer-reviewed by :
Dr. Nagamani Ng
Thanks dr Naval for your reply. I do agree on what u said. Let me tell you something else.
Firstly although he has lupus but he never got the traditional symptoms of it like butterfly like rashes, neither agrevetted in sunlight, mouth ulcers, hair fall etc. His symptoms were joint pain ( only in the begining), low graded fever, voice breaking and swelling in lip or in upper lid of eye. In the begining (2013) his protein creat ratio was 400. When it relapsed (2016) His steroid had stopped but he was all along with HCQS 200.
Secondly with due regards as we all know that the treatment is not for cure but will suppress it for a while. In 2015 when it relapsed I also started with homeopathic treatment parallely when his ratio was 3200. We knew that his recovery rate was fast. We also knew with high dosage of immunosuppresant he might catch infection and might have to be on antibiotic. But it never happened. He caught infection but I was assured that he will get well and he did. I took him to our GP for chest exam but he said that no antibiotic required. Our homeopath (MD) was a Principal in homeopathic college and is still a professor in the college. I did this because I had heard a lot about him and knew that our medicines will come down one day. There mode of treatment is to , make the body vital or strong so that immunity does not hit you or recognize it as an enemy. That's what they say is constitutional in nature.
As per him my sons condition is such that the vitality is supporting. What he says is its the reports which had tagged him then why don't we reduce the dosge and check the reports. Ratio cannot jump to 3000 from 100 all of a sudden can it?. We also have a visual examination at home and can get blood reports repeated. He said that he would continue to treat him for vitality, but the condition he has achieved right now is rare and would be better if suppressive medicines are stopped. I was bit confused and wanted to know can we take a calculated risk for a while? If we find things r not going well which means ratio shooting to 400 or even 500, can we come back to allopathy?
I had seen some miraculous treat by him, but he says its pure science. Can we do this for a while? I know I am bothering u but thought of discussing this.
XXXX
Firstly although he has lupus but he never got the traditional symptoms of it like butterfly like rashes, neither agrevetted in sunlight, mouth ulcers, hair fall etc. His symptoms were joint pain ( only in the begining), low graded fever, voice breaking and swelling in lip or in upper lid of eye. In the begining (2013) his protein creat ratio was 400. When it relapsed (2016) His steroid had stopped but he was all along with HCQS 200.
Secondly with due regards as we all know that the treatment is not for cure but will suppress it for a while. In 2015 when it relapsed I also started with homeopathic treatment parallely when his ratio was 3200. We knew that his recovery rate was fast. We also knew with high dosage of immunosuppresant he might catch infection and might have to be on antibiotic. But it never happened. He caught infection but I was assured that he will get well and he did. I took him to our GP for chest exam but he said that no antibiotic required. Our homeopath (MD) was a Principal in homeopathic college and is still a professor in the college. I did this because I had heard a lot about him and knew that our medicines will come down one day. There mode of treatment is to , make the body vital or strong so that immunity does not hit you or recognize it as an enemy. That's what they say is constitutional in nature.
As per him my sons condition is such that the vitality is supporting. What he says is its the reports which had tagged him then why don't we reduce the dosge and check the reports. Ratio cannot jump to 3000 from 100 all of a sudden can it?. We also have a visual examination at home and can get blood reports repeated. He said that he would continue to treat him for vitality, but the condition he has achieved right now is rare and would be better if suppressive medicines are stopped. I was bit confused and wanted to know can we take a calculated risk for a while? If we find things r not going well which means ratio shooting to 400 or even 500, can we come back to allopathy?
I had seen some miraculous treat by him, but he says its pure science. Can we do this for a while? I know I am bothering u but thought of discussing this.
XXXX
Brief Answer:
Homeopathic treatment
Detailed Answer:
Good evening XXXX
Well, if you had ask me and if it was my son/daughter I would never take the chance...
Firstly, I think there shouldnt be any doubt in your mind about the diagnosis...Reason being, we have the biopsy results with us.Along with his autoantibody being positive. . Not all patients have textbook presentation of rashes, ulcers,...And he has been seen by a few nephrologist and rheumatologist which confirm the diagnosis.. Moreoever he responded to treatment.
Secondly, As for the homeopathic treatment. I have nothing against it But I wont recommend you stopping our treatment and switching to only that. If you want , you can continue side by side...Reason....Risk is always there...In our daily practice, we see daily 4 cases spoiled by wasting time with homeopathy and ayurvedic... You are not the first one to believe our medicines will not cure, only control...I only ask , if homeopathic had such a good cure, why are the countries like UK/US wasting money on newer drugs for disease control???Why didnt they yet adapt homeopathic/ayurvedic...
I understand your beliefs for the professor. He may be good...And may have performed miracles..But every person is different, Lupus is different in every person and the treatment we initiate is different with every person. Some people do good with only HCQS, some will need 4-5 drugs... With other diseases like rheumatoid arthritis, we are still willing to risk some time but never with lupus...As I told you about a young girl, 16 years of SLE with Class IV...She took Cyclophosphamide 6 doses...Someone told the same story to her and she stopped all treatment. Tried homeopathic/Ayurvedic. Reported back to us after 8 months with Creatinine 12...Now she needs a renal transplant or else life long dialysis...
Eventually choice is going to be yours...But lupus class III/IV is not something worth risking.There is a chance it may not come back, but considering he has had relapses while on treatment, it is not a good option... I am only explaining cause he s a kid and I dont want him to suffer...Whatever we practise, is as a result of lof of studies/trials/failed treatment...
Or else, I may not explain any further considering your doubts in diagnosis and treatment with Allopathic...It s a free world and everyone is willing to do what they like
Take care
Regards
Dr Naval
Homeopathic treatment
Detailed Answer:
Good evening XXXX
Well, if you had ask me and if it was my son/daughter I would never take the chance...
Firstly, I think there shouldnt be any doubt in your mind about the diagnosis...Reason being, we have the biopsy results with us.Along with his autoantibody being positive. . Not all patients have textbook presentation of rashes, ulcers,...And he has been seen by a few nephrologist and rheumatologist which confirm the diagnosis.. Moreoever he responded to treatment.
Secondly, As for the homeopathic treatment. I have nothing against it But I wont recommend you stopping our treatment and switching to only that. If you want , you can continue side by side...Reason....Risk is always there...In our daily practice, we see daily 4 cases spoiled by wasting time with homeopathy and ayurvedic... You are not the first one to believe our medicines will not cure, only control...I only ask , if homeopathic had such a good cure, why are the countries like UK/US wasting money on newer drugs for disease control???Why didnt they yet adapt homeopathic/ayurvedic...
I understand your beliefs for the professor. He may be good...And may have performed miracles..But every person is different, Lupus is different in every person and the treatment we initiate is different with every person. Some people do good with only HCQS, some will need 4-5 drugs... With other diseases like rheumatoid arthritis, we are still willing to risk some time but never with lupus...As I told you about a young girl, 16 years of SLE with Class IV...She took Cyclophosphamide 6 doses...Someone told the same story to her and she stopped all treatment. Tried homeopathic/Ayurvedic. Reported back to us after 8 months with Creatinine 12...Now she needs a renal transplant or else life long dialysis...
Eventually choice is going to be yours...But lupus class III/IV is not something worth risking.There is a chance it may not come back, but considering he has had relapses while on treatment, it is not a good option... I am only explaining cause he s a kid and I dont want him to suffer...Whatever we practise, is as a result of lof of studies/trials/failed treatment...
Or else, I may not explain any further considering your doubts in diagnosis and treatment with Allopathic...It s a free world and everyone is willing to do what they like
Take care
Regards
Dr Naval
Above answer was peer-reviewed by :
Dr. Yogesh D
Dear dr Naval,
Well first of all thanks very much for your answer. Your answer has very strong base and the argument u have put forward are very strong. That is what i needed and believe me I did start homeopathy as i believe in it as there are some areas where it has shown its worth, but certainly class 3 lupus is not an example worth experimenting. As i said to u your answer is exactly what i needed. What i conclude homeopathy would be a good support when mmf would have stopped, but as u said it would not be proper to cut short the scheduled treatment. Thanks once again for points u covered.
My son is well and i can assure u that i will not compromise slightest with him and the required treatment. My only wish is that if this lifelong hcqs would have stopped, no matter mmf would be continuing for another 3 year as per the step down plan of our Rheumat.
Regards and a belated happy diwal.i
Well first of all thanks very much for your answer. Your answer has very strong base and the argument u have put forward are very strong. That is what i needed and believe me I did start homeopathy as i believe in it as there are some areas where it has shown its worth, but certainly class 3 lupus is not an example worth experimenting. As i said to u your answer is exactly what i needed. What i conclude homeopathy would be a good support when mmf would have stopped, but as u said it would not be proper to cut short the scheduled treatment. Thanks once again for points u covered.
My son is well and i can assure u that i will not compromise slightest with him and the required treatment. My only wish is that if this lifelong hcqs would have stopped, no matter mmf would be continuing for another 3 year as per the step down plan of our Rheumat.
Regards and a belated happy diwal.i
Brief Answer:
Further course
Detailed Answer:
Good evening
Well, I am glad you are taking the right decision. As for medicines, we will reduce it over time . A lot of times kids disease does go into remission by the time they turn 18-20...So that is something we will watch out for
Happy diwali to you too
REgards
Dr Naval
Further course
Detailed Answer:
Good evening
Well, I am glad you are taking the right decision. As for medicines, we will reduce it over time . A lot of times kids disease does go into remission by the time they turn 18-20...So that is something we will watch out for
Happy diwali to you too
REgards
Dr Naval
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. Chakravarthy Mazumdar
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
