Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

[Jonathan Edwards]

Thank you for your reply @Jonathan Edwards

My RA diagnosis was based on new symptoms and new findings on bloodwork. I was diagnosed with ME/CFS 11 years ago by Dr. Derek Enlander in N.Y. I have had my ana tested repeatedly with showed negative. About a year ago, I started having swollen hands with pain. This was followed by a positive ana result. The pain increased with some shifting in my fingers. I was finally diagnosed by a rheumatologist with high anti ccp although negative for RA factor. To confirm the diagnosis, I had an ultrasound of my hands which showed remarked inflammation in my wrists and two knuckles on each hand. My exhaustion/weakness has increased since this new diagnosis and all my other ME/CFS symptoms remain.

Thanks Nielk, that gives me a feel for what has been going on. It supports the idea that there is a lot of overlap in these processes and that at least some of what we call ME will turn out to be autoimmune. Getting the right treatment for RA can take a bit of time because it is hard to predict what will be best for each individual but it sounds as if rituximab would be one of the options since there are positive antibodies (it probably does not matter much which antibodies they are). I have to be careful not to be giving specific advice, as that would be wrong, but I think I can say that much!

 

[aimossy]

Dear @Jonathan Edwards ,
Thankyou so much for being on here and for all the work you are doing for us. Best of luck for the IIME conference and I hope some of it is enjoyable.

 

[Nielk]

Thanks Nielk, that gives me a feel for what has been going on. It supports the idea that there is a lot of overlap in these processes and that at least some of what we call ME will turn out to be autoimmune. Getting the right treatment for RA can take a bit of time because it is hard to predict what will be best for each individual but it sounds as if rituximab would be one of the options since there are positive antibodies (it probably does not matter much which antibodies they are). I have to be careful not to be giving specific advice, as that would be wrong, but I think I can say that much!

Just an update -

I saw the rheumatologist yesterday and she agreed that it is time for me to try rituximab, since humira, plaquenil and prednisolone have not helped. Actually, I am getting progressively worse. She took some bloodwork that is needed in order to get approved for rituximab. she doesn't think this will be a problem since I have already been approved for humira. I was impressed that she was actually familiar with the study into rituximab for ME/CFS.

Her practice is connected with a major hospital here in NY and she gave me tour of the facility where they would give the infusions. She said that I would get two infusions, lasting 5 hours each in two weeks. This is supposed to last for 6 months? She will also give me something else during that time. I am not clear yet as to what that it.

I will keep you posted as to my progress and thank you for your interest.

 

[Jonathan Edwards]

Just an update -

I saw the rheumatologist yesterday and she agreed that it is time for me to try rituximab, since humira, plaquenil and prednisolone have not helped.

It sounds as if you are getting well thought out management, Nielk. Fingers crossed.

 

[Kate_UK]

Get your Invest in ME 2014 Conference DVDs while they are discounted!
From now until the end of May 2014 the charity will offer the DVD at a reduced rate.
http://www.investinme.eu/DVD-earlybird.html

 

[Firestormm]

@Jonathan Edwards

In light of recent discussion, I wondered if you would be excluding patients from the UK Rituximab study and Trial who have a diagnosis or symptoms pertaining to Rheumatoid Arthritis and who also had a diagnosis of ME? Presumably you would be.

Thanks.

 

[Jonathan Edwards]

@Jonathan Edwards

In light of recent discussion, I wondered if you would be excluding patients from the UK Rituximab study and Trial who have a diagnosis or symptoms pertaining to Rheumatoid Arthritis and who also had a diagnosis of ME? Presumably you would be.

Thanks.

I am not an expert on the clinical criteria but I assume that the standard criteria needed to make any study interpretable exclude the presence of an alternative diagnosis of an inflammatory disease. And of course people with a diagnosis of rheumatoid arthritis are entitled to have rituximab anyway.

 

[Kate_UK]

TOTAL RAISED £336,000
http://www.ukrituximabtrial.org/Rituximab news-Jun14 01.htm

 

[Nielk]

I just found out that my insurance has approved the Rituximab. I am awaiting a call for appointment for my first infusion.

In order to chart my (hopeful) progress, I am preparing a worksheet outlining and distinguishing my symptoms between my ME and my RA. There is some definite overlap but, many are definitely distinguishable.

I will keep you posted.

 

[NK17]

I just found out that my insurance has approved the Rituximab. I am awaiting a call for appointment for my first infusion.

In order to chart my (hopeful) progress, I am preparing a worksheet outlining and distinguishing my symptoms between my ME and my RA. There is some definite overlap but, many are definitely distinguishable.

I will keep you posted.

Dear @Nielk, these are such good news!
I wish you the best outcome with the Rituximab treatment and please keep on keeping us informed, as much as your energy level lets you.

Sending you all my best thoughts.

 

[catly]

Great news @Nielk , hoping the treatments go smothely and that you get improvements in both your RA and ME! Will be looking forward to your posts.

 

[Sushi]

I just found out that my insurance has approved the Rituximab. I am awaiting a call for appointment for my first infusion.

In order to chart my (hopeful) progress, I am preparing a worksheet outlining and distinguishing my symptoms between my ME and my RA. There is some definite overlap but, many are definitely distinguishable.

I will keep you posted.

Hi Nielk,

Great news! Do you feel like starting a thread to post your Rituximab journey?

Best wishes,
Sushi

 

[Nielk]

Hi Nielk,

Great news! Do you feel like starting a thread to post your Rituximab journey?

Best wishes,
Sushi

Yes. I think I will start a thread. When I do, I will post the link here.

 

[Isabelle]

I am new here so I hope it is okay if I comment on an established thread.

I developed ME/CFS following a severe viral infection, and have recently been diagnosed with osteoporosis after multiple fractures. I wondered if the OP could be related to the ME/CFS. That perhaps bone is one of the targets, or caught in the crosshairs downstream, of an autoimmune process, rather than the OP being simply due to insufficient Vitamin D/Ca. Professor Edwards stated that, in RA the immune complexes bind to a particular receptor that is found in nine locations. It made me think about receptors, proteins etc. that occurred in both the cns and bone, and I recalled Bone Morphogenic Proteins. I think BMPs are expressed in astrocytes (oligodendrocytes?) after inflammation. I wondered if BMP signaling could be disrupted in some way. It’s probably a silly idea. I don’t have many light globe moments these days… maybe the occasional candle flicker.

I also wondered what effect Rituximab would have on bone metabolism, and whether OP would exclude me from treatment? Also, as many PWME seem to develop signs of neuropathy over time (e.g. paraesthesia), would this be a problem? Rituximab is a targeted therapy so I presume it would be less tough on nerves than a drug such as Vincristine, but I thought I’d ask.

My family has a history of thyroid problems, and RA. So the gene pool may be a little murky.

Thanks to Professor Edwards for your responses here. It is very interesting. I (really) hope your research pans out.

 

[Nielk]

Yes. I think I will start a thread. When I do, I will post the link here.

I started a thread here.

 

[Jonathan Edwards]

I am new here so I hope it is okay if I comment on an established thread.

I developed ME/CFS following a severe viral infection, and have recently been diagnosed with osteoporosis after multiple fractures. I wondered if the OP could be related to the ME/CFS. That perhaps bone is one of the targets, or caught in the crosshairs downstream, of an autoimmune process, rather than the OP being simply due to insufficient Vitamin D/Ca. Professor Edwards stated that, in RA the immune complexes bind to a particular receptor that is found in nine locations. It made me think about receptors, proteins etc. that occurred in both the cns and bone, and I recalled Bone Morphogenic Proteins. I think BMPs are expressed in astrocytes (oligodendrocytes?) after inflammation. I wondered if BMP signaling could be disrupted in some way. It’s probably a silly idea. I don’t have many light globe moments these days… maybe the occasional candle flicker.

I also wondered what effect Rituximab would have on bone metabolism, and whether OP would exclude me from treatment? Also, as many PWME seem to develop signs of neuropathy over time (e.g. paraesthesia), would this be a problem? Rituximab is a targeted therapy so I presume it would be less tough on nerves than a drug such as Vincristine, but I thought I’d ask.

My family has a history of thyroid problems, and RA. So the gene pool may be a little murky.

Thanks to Professor Edwards for your responses here. It is very interesting. I (really) hope your research pans out.

I guess the obvious link to osteoporosis would be reduced physical activity - almost guaranteed with ME I presume. Osteoporosis is not in itself due to lack of vitamin D or calcium, although low bone density may be aggravated by those. I think it is relatively unlikely that bone is a target for an immune process although I could not exclude it.

Rituximab is unlikely to have any effect on bone metabolism directly but if it helps fatigue and allows exercise it could have a dramatic effect. Osteoporosis would not influence use of rituximab if it becomes a confirmed option. Neuropathy is also not an issue. The neruropathy of vincristine is a very specific thing for that drug that occurs with hardly any other drugs in general use.

 

[Isabelle]

Hi Professor Edwards

My doctor says that I am too young to have OP, but is pretty definite that it might be due to insufficient ca/vit D. Or at least that supplementing these might help somewhat.

I think that a disease process sometimes seems like dominoes going down, and that is why I wondered if there might be a connection.

Thank you for responding.

 

[MeSci]

I am new here so I hope it is okay if I comment on an established thread.

I developed ME/CFS following a severe viral infection, and have recently been diagnosed with osteoporosis after multiple fractures. I wondered if the OP could be related to the ME/CFS. That perhaps bone is one of the targets, or caught in the crosshairs downstream, of an autoimmune process, rather than the OP being simply due to insufficient Vitamin D/Ca. Professor Edwards stated that, in RA the immune complexes bind to a particular receptor that is found in nine locations. It made me think about receptors, proteins etc. that occurred in both the cns and bone, and I recalled Bone Morphogenic Proteins. I think BMPs are expressed in astrocytes (oligodendrocytes?) after inflammation. I wondered if BMP signaling could be disrupted in some way. It’s probably a silly idea. I don’t have many light globe moments these days… maybe the occasional candle flicker.

I also wondered what effect Rituximab would have on bone metabolism, and whether OP would exclude me from treatment? Also, as many PWME seem to develop signs of neuropathy over time (e.g. paraesthesia), would this be a problem? Rituximab is a targeted therapy so I presume it would be less tough on nerves than a drug such as Vincristine, but I thought I’d ask.

My family has a history of thyroid problems, and RA. So the gene pool may be a little murky.

Thanks to Professor Edwards for your responses here. It is very interesting. I (really) hope your research pans out.

Hope you don't mind me replying too!

Welcome, @Isabelle! As far as I am concerned, newbies are welcome to dive straight in - I probably did.

After over 50 years of what I thought of as my 'cast iron bones', and after 15 years with ME, I started losing fillings and a piece of tooth, and suffered a wrist fracture from a minor fall. I discovered that I also had severe hyponatraemia. ME sufferers are prone to losing minerals in urine, and I guess this had reached extreme levels for me.

I increased my salt intake and started taking bone mineral supplements. Things seem much better - my teeth are less prone to bits falling out or off, and my bones feel stronger. I don't know my actual bone mineral density as my GP refused to refer me for a scan on the grounds that I was not willing to take bisphosphonates.

You might find some of the threads here on Vitamin D interesting, e.g. this one.

 

[maryb]

@MeSci
quote
'I don't know my actual bone mineral density as my GP refused to refer me for a scan on the grounds that I was not willing to take bisphosphonates'

disgraceful.

I asked for a bone scan, my GP offered me a x-ray which I refused. He agreed to a bone scan dependent on me producing a copy of a private scan I had done 2yrs previously showing I had osteopenia. My new scan showed I had osteoporosis.
sorry to go off topic....

 

[Isabelle]

Hope you don't mind me replying too!

Welcome, @Isabelle! As far as I am concerned, newbies are welcome to dive straight in - I probably did.

After over 50 years of what I thought of as my 'cast iron bones', and after 15 years with ME, I started losing fillings and a piece of tooth, and suffered a wrist fracture from a minor fall. I discovered that I also had severe hyponatraemia. ME sufferers are prone to losing minerals in urine, and I guess this had reached extreme levels for me.

I increased my salt intake and started taking bone mineral supplements. Things seem much better - my teeth are less prone to bits falling out or off, and my bones feel stronger. I don't know my actual bone mineral density as my GP refused to refer me for a scan on the grounds that I was not willing to take bisphosphonates.

You might find some of the threads here on Vitamin D interesting, e.g. this one.

@MeSci

Thank you for responding to my post. I don’t mind at all. Thanks also for the link. I will definitely read it, but my printer is broken and I find it hard to read from the computer. Probably not great for the planet, but I print both sides.

I have also had fillings falling out lately. It hadn’t occurred to me that it might be due to the OP.

My doctor was a little reluctant to order the bone scan. But after the fifth fracture. I thought it was a bit odd. She said she was so shocked by the results, that she left it on her desk for a few days before contacting me. I don’t think it is a good thing to shock your doctor. I have trouble with taking supplements though. They make me feel a bit sick. Still, it’s better than being like Humpty Dumpty. The doctor also said not to go horse riding or play golf. Which I’m sure is good advice, but not really an option at the moment. As Professor Edwards noted, fatigue and physical activity don’t really go together.