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Hi!
I have got bad news. Today we went to daughters rheumatolgist and blood tests are not good. There is still inflamamtion in progress and her CRP and ESR are high.
My poor child today went through procedure of removing joint fluid and applications steroids to her joints.
From her knee dr extracted 10 ml synovial fluid and from ankle none and she injected 20 mg Lederlon ( steroid) in it.Rheumatologist is defenitly for bilogics because of lenght of her inflammation and blood tests.
She sad that in our country there was only one case of child who was on biologics and he developed tuberculosis. When I asked about side effects and limfoma she sad that arthritis patients are in general more susceptible for limfoma because of illnes itself and that there is no coleration betwen bilogics but I think that this is because they are on immunosuppressants and not because of arthritis.
She sad that she wolud take MTX along with bilogics atleast for 2 years and when I asked is there remission afterwards she sad that in some cases yes but mostly the symptoms return. I wonder what is the point? Yes, I know, it will stop progression for a while but what about long term side effects? Biologics are in use for 20 years and we do not know what is the long term outcome and effect on whole body and organs…
I asked if there is a way of IVHi Zeljana,
I’m so sorry that you and your child are suffering.
I noticed in your signature line that Ema has been on the new antibiotic protocol (switching abx) since June of this year, and you’ve just made another change, increasing the Zith.
If you can stand to give it a bit more time and look for small windows of improvement. Less stiff in the morning. A few hours of the day where she forgets about her pain.
Does Dr S know about the strep titer still being positive? You may be on to something there. Maybe once the strep has cleared, she will start to make more progress? Did Dr. S think IVs would be a good idea in your daughter’s case?
The uncertainty and fear is one of the worst things about this disease.
I noticed in your signature line that Ema has been on the new antibiotic protocol (switching abx) since June of this year, and you’ve just made another change, increasing the Zith.
In november 2013 she was on erythromicin and short time on amoxicilline. Erythromicine was till June. Last week Dr.S suggested increasing Zitromax so we are starting this week. Seems to me so far she was in the best shape on erythromicine because her strep was falling. So this is an option too, to go back on erythromicin if increasing Zitromax woulud not help.
If you can stand to give it a bit more time and look for small windows of improvement. Less stiff in the morning. A few hours of the day where she forgets about her pain.
Yes, she can sometimes get out the bed without much limping and without carrying her to the toilet.
Does Dr S know about the strep titer still being positive?
Yes. He also agrees on removing tonsils if nothing would help.
You may be on to something there. Maybe once the strep has cleared, she will start to make more progress?
I belive it also but her strep is about 200 and rheumatologist sad that this is low and it is ok. But I think that it must be negative.
Did Dr. S think IVs would be a good idea in your daughter’s case?
He did not mentioned it but and even if that is the key her rheumatologist do not do it for arthritis, only IV with steroids.
Thank you so much for you quick response and advices!!
Zeljana
Zeljana, you wrote:
Yes, she can sometimes get out the bed without much limping and without carrying her to the toilet.
That’s very encouraging!
From the Historical Protocol, emphasis in bold is mine:
First signs of improvement (toc)
There is usually little objective improvement in patients during the first three months of therapy. In the ensuing three to nine months the improvement, when it occurs, is quite gradual. The course of events is similar to, although sometimes slower than that noted with gold methotrexate or chloroquine therapy.
The first sign of improvement is usually a lessening of duration of morning stiffness although the initial onset may be as severe as usual. The patient notices a general feeling of well-being lasting initially for perhaps an hour or two and gradually increasing to more good days and fewer bad days with a longer time span in between.
As antimycoplasma therapy continues, toxic substances are gradually reduced and normal functions begin to return. Strength increases, blood count rises to its normal level, mental acuity, ability to concentrate, a return in interest in work and a lessened sense of irritability all become noticeable dividends. All these symptoms may improve remarkably with rheumatoid remission, even after having been present for years.
And, more from the Historical Protocol:
Patients stay on medication until all laboratory tests return to normal. Some patients indicated they began to feel better long before their laboratory results improved. The converse can also be true.
It can be very frustrating when lab results are not improving. However, Dr. Brown noted that sometimes labs improved before symptoms, and sometimes the opposite happened. That is, symptoms began to improve before labs.
We are all searching for definite answers, but this disease does not lend itself readily to definite answers. Everyone responds to the protocol a little differently, and, obviously, not everyone is on the exact same protocol.
It can be frustrating to be suffering in the midst of a Herxheimer flare in response to a change of protocol and to be feeling unsure and fearful as to whether the pain is a good sign (I’m herxing! It’s working!) or whether the pain is a bad sign (I’m getting worse! It’s not working!).
Also from the Historical Protocol:
Differentiating between a Herxheimer, an RA flare and an allergic reaction to the drug –
Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.
WBC will elevate in a Herxheimer and lower in a flare.
A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.It’s good to read you have some guidance from Dr. S. If down the line, he thinks IVs are in order, maybe there is a physician besides your rheumatologist who might be willing to learn the IV procedure from Dr. S and do them. To be clear, I’m not saying your daughter needs IVs.
Lastly, have your had her tested for fungal overgrowths?
From the Historical Protocol:
Candida is not usually a problem, but in some patients it can become severe. Acidophilus should be prescribed as a preventive and testing should be done regularly to prevent an overgrowth from occurring. The candida, if persistent, should also be treated concurrently with the rheumatoid disease.
Good luck and best to you and your daughter.
@zeljana wrote:
Yes, she can sometimes get out the bed without much limping and without carrying her to the toilet.
Zeljana
Zeljana, that is much more pain and disability than we have ever experienced and I’m so sorry your daughter is still suffering so much. We always said we would try a biologic if our daughter could not function, and being carried to the toilet is definitely not functioning.
We were told we could do biologics in conjunction with AP. People have done that here, and have been able to stop their biologic (unlike the what your rheum described). I think your concerns about strep are valid and I’m sure if you find a doctor to remove her tonsils, they would want to do that before she started a biologic and they would help you move a little faster on it. Hopefully you would see some improvement after that.
I know how very hard these decisions are, but it is also hard to see your child in pain.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
That’s very encouraging!
From the Historical Protocol, emphasis in bold is mine:
First signs of improvement (toc)
There is usually little objective improvement in patients during the first three months of therapy. In the ensuing three to nine months the improvement, when it occurs, is quite gradual. The course of events is similar to, although sometimes slower than that noted with gold methotrexate or chloroquine therapy.
The first sign of improvement is usually a lessening of duration of morning stiffness although the initial onset may be as severe as usual. The patient notices a general feeling of well-being lasting initially for perhaps an hour or two and gradually increasing to more good days and fewer bad days with a longer time span in between.
Thank you for this ! This IS realy encouraging!
Differentiating between a Herxheimer, an RA flare and an allergic reaction to the drug –
Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.
WBC will elevate in a Herxheimer and lower in a flare.
Can you tell me please what is WBC?
Lastly, have your had her tested for fungal overgrowths?
Not recently, but she did have Candida in her stool. We treated it with Nystatin, grape seeds extract…
From the Historical Protocol:
Candida is not usually a problem, but in some patients it can become severe. Acidophilus should be prescribed as a preventive and testing should be done regularly to prevent an overgrowth from occurring. The candida, if persistent, should also be treated concurrently with the rheumatoid disease.
We started with kefir and she is taking probiotics with Lactobacillus achidophilus…
Good luck and best to you and your daughter.
Thank you so much !!
@Suzanne wrote:
Zeljana, that is much more pain and disability than we have ever experienced and I’m so sorry your daughter is still suffering so much. We always said we would try a biologic if our daughter could not function, and being carried to the toilet is definitely not functioning.
We were told we could do biologics in conjunction with AP. People have done that here, and have been able to stop their biologic (unlike the what your rheum described).
I am affraid of bilogics and its long term side effects. Rheumatologist sad that she would have take MTX and biologics together atleast for 2 years and that ther is no proven remission or some patients do not have response at all on it. I am aware of its side effects which are been reported but on children biologics are in use only 10 years. What then, nobody knows..
Fisrt two are scary – limfoma and superinfections.I think your concerns about strep are valid and I’m sure if you find a doctor to remove her tonsils, they would want to do that before she started a biologic and they would help you move a little faster on it. Hopefully you would see some improvement after that.
I hope so too!!
I know how very hard these decisions are, but it is also hard to see your child in pain.
Yes, this is hard path for both of us.
Thank you Suzanne!
I have posted this on another topic but maybe I must put it here…
I just went through my daughter lab tests and saw that she has her IgA elevated but her IgM and IgG are ok.
Do you know what it could be?Thank you !
Zeljana
Zeljana,
I had my tonsils removed when I was 29 and it did not help in anything. Today I regret I did it.
Sorry, maybe you have written about it – is your child on any diet?
Linda L.@Linda L wrote:
Zeljana,
I had my tonsils removed when I was 29 and it did not help in anything. Today I regret I did it.
Sorry, maybe you have written about it – is your child on any diet?
Linda L.No, at the moment she is not. She was on elimination diet for 1,5 year ( no gluten, eggs, milk, night shades vegetables , dairy, sugar, nuts…) with no progress but now I am thinking to go on gluten free again.
Why do you regret it?Zeljana
Zeljana,
That time they removed it due to my frequent colds/flue. A main function of tonsils is to trap germs which we breathe in. Proteins called antibodies produced by the immune cells in the tonsils help to kill germs and help to prevent throat and lung infections. So they are very important in order to protect us. I have never experienced any advantage after they removed them. Opposite, I had every flu which was around. I think a long time ago the doctors used to perform those operations, but no longer? We all know that doctors are quick to make operations. Why do they think it could help your child?
Linda L.@Linda L wrote:
Why do they think it could help your child?
Linda L.Because she has strep positive for a long time. We did remove her adenoid but if it is strep is hidden it can be in tonsilis not adenoid.
Her pediatrition sad that after age of 6 tonsils are not too much of use anymore..Can you tell me please what is WBC?
Zeljana,
WBC is the English abbreviation for white blood cell count, and is normally ordered as part of a test called CBC (complete blood count).
http://labtestsonline.org/understanding/analytes/wbc/tab/test/
@m. wrote:
Can you tell me please what is WBC?
Zeljana,
WBC is the English abbreviation for white blood cell count, and is normally ordered as part of a test called CBC (complete blood count).
http://labtestsonline.org/understanding/analytes/wbc/tab/test/
Thank you, I have already ” investigate ” it..Sometimes the abbreviations confuse me (as you can see english is not my first language..) 😆
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