Hi,
I am Sara in the story above, wife of the recovered patient Björn Sjöberg. I haven´t visited the forum in a long time but did now, and read the story of my family. I am sorry I did not see it earlier. I will answer the questions I can answer and give some more information.
Wise of experience I will say that I am not able to answer any questions about how these drugs work (dont know) and that I am not interested in any debate. I just want to share what helped my husband in case someone could benefit from that. He has done the same in swedish on facebook to give fellow patients the information that this worked for him and maybe give some hope. Since I don´t visit the forum often you can write to me at
sarasjoberg79@gmail.com if you have a specific question that I did answer to below.
I realize we are extremely lucky and I hope Björn will continue to have this health from now on. Living with this for four years is nothing compared to most of you but still it was hell in a family with small children and took a toll on all of us. To go from that level of illness to normal health, I sometimes can´t believe how lucky we are. I am sure many more patients could get well or better if more doctors were a little more brave and caring like Jonas Axelsson, the doctor that treated Björn.
There are some minor misconceptions in the article related to timeline for example, but the core of it is correct. It is written by a fellow recovered patient that also is called Björn, which can cause some confusion. He has made a great impact for patients, written a book about his own story, recently completed a long walk for ME and been part of the work that recently led to the decision of the parliament to establish a center for ME-knowledge in Sweden. Jonas Axelsson was one of the speakers at a hearing to inform the politicians about the situation for patients.
I have structured the text so you only have to read what interests you.
History of all the drugs Björn has been taking before otezla and antivirals.
*Acute phase after getting ill: strong painkillers, various things for anxiety, sleep etc.
*Trying rituximab in Norway. (no real improvement but after the horrendous trips there– no worsening either after recovering from PEM from travelling. There may even have been a tiny improvement but that could also have been a natural course of the disease.)
* Symptom relief by doxidropa (dops) after finding out about Delayed orthostatic hypotension (not POTS, since his heartrate did not rise). Highest possible dose, he took the same as old men with parkinson. This made a real difference, functioning level went from severe to moderate I would say. He woke up, felt like hell, took the pills and slowly the body started to function. It reduced sound intolerance, dizziness, overall disease feeling, removed black circles under eyes. He was like an addict sometimes, waiting for the next dose so mind and body could work again.
* Better muscle functioning still with mestinon.
Doses of Otezla and antivirals
Björn started in november with
Otezal (apremilast) 30 mg, 2 times a day (morning and night)
Got great effect but then crashed around christmas, probably due to an infection . Jonas theory was (if I remember right and note that I might got it wrong in the first place) that the Otezla works but when the disease activity rises (viruses or some mechanism related to that) the Otezla can´t to its work properly. He revised his thinking and and said he wanted to add a mix of antivirals.
So, in april Björn started with:
Ritonavir 100 mg / day (at night)
Valgacyklovir 450 mg /day (in the morning)
Isentress 600 mg /day (two times I think)
This apparently got Otezla working again and the recovery process continued. It took about 6 weeks from starting antivirals for the process to turn around and after maybe two months most of the symptoms were gone. Of course it was still a long road from there, getting off doxidropa and mestinon and getting back to life in many different ways, building up activity level etc.
Cutting down on symptom relief medication
A very visible ”objective” sign that something really happened in the body and not in the mind (if anybody was stupid enough to think so) was that Björn rapidly had to cut down on Doxidropa that regulated his blood pressure. Before otezla and antivirals he needed maximum dose, now the same doses made his heart rush. He cut down a pill at a time and finally did not need it anymore.
Jonas said that now when the body worked, the mestinon was being counterproductive and Björn had to cut down to maximise the recovery. This was really hard, since cutting down gave severe anxiety. He did it very gradually over several months, but Jonas was right, he continued to improve.
Medication today:
Otezla, valgacyklovir and ritonavir (doses above)
After a few months Jonas wanted Björn to try and remove one antiviral at a time, to find out which one was most important. Since Isentress cost us about an unsustainable 500 dollars a month (all the others were mostly covered by the public system) we tried with that first and nothing bad happened. Either it was not necessary or it had already completed its work, I have no idea. Björn has not yet been able to quit any of the others. He has felt symptoms when he tried but that was a while ago know. Jonas says that since Björn can feel a hint of his ME-symptoms when he gets other infections (shortness of breath, some tingling in arms) he does not advice to experiment with this any more at this point. So Björn keeps taking the same doses.
Tests
Björn could not travel if it was not extremely necessary so he did not go to Jonas for testing. I think he did some extented but still pretty basic blood tests through his regular doctor and these were sent to Jonas. But Jonas also got all the journals and results from testing at the hospital when Björn first got ill, describing that he did not have MS, a brain tumour etc. Björn was also supposed to save urine for three days when he could not take doxidropa and mestinon, and did so feeling completely awful, but the local hospital lost the samples ... I don´t think Jonas had the heart to make him do it all over again so he went on with treatment anyway based on what he knew. Hence: I cant give you any proper answers about testing and viruses. But now at the Amelie Clinic, Jonas does much more testing, I have understood.
Info about his ME-symptoms and disease level
Some additional information that may give a hint of Björns history or symptoms resemble yours, if there is some subgroup here.
He had most of the
symptoms other patients report of: overall feeling of being very ill, pain in especially arms and neck, head ache, muscles not working (legs not wanting to walk, hands not able to function normally), dry eyes, nausea, hard to swallow, hard to breath and sometimes talk, dizziness, disrupted sleep, cognically impaired, could not stand sound, pain when someone touched the skin, looking pale, anxiety and a lot more. Had to remove his gall bladder during the disease period.
He used to be a long distance swimmer and is able to push himself really hard psychically. At his worst, he described that the activity he could do before acid level threshold (sorry, bad english) was really low and just getting up from a chair could cause the same feeling as when you could not do a single repetition more at the gym.
Before starting on otezla he never had a cold or a fever while having ME, only worsening of symptoms that may have been his response when the rest of the family had a cold.
Level of functioning:
Without symptom relief: Bed- or couch-bound. Severe probably, with some better days at a more moderate level and worse days when he could hardly move in bed, greath breathing difficulties, could not eat, got strange spasms at one point, During 2017 the steps per day probably mirrored about 3-4 tours from bedroom to bathroom and kitchen. At the lowest points he had too use a wheelchair and could not get up from the sofa without my help.
With doxidropa and mestinon: moderate and even mild on some days. Started to visit the workplace for about an hour at a time. When he had to stay of them for three days to do testing he was back to bed- and couchbound.
About his doctors
Björn got doxidropa and mestinon from Artur Fedorowski, heart specialist with an interest in POTS and related diagnoses, now also long covid I think.
Jonas Axelsson was the doctor prescribing Otezla and antivirals. He is one of the best people I have ever met. I got in contact with him by emailing him before he started his private clinic. He accepted to try to help Björn basically in his free time, I think out of both empathy and curiosity. I think that he had then already treated some patients and knew about the horrors of this disease. Patients had contacted him since he worked with stem cells. He is among other specialties an immunologist and is used to treating people with antivirals and similar after kidney transplants, if I am not mistaken. He said that the "do no harm" thing in the doctors oath can´t be taken as an excuse not to do anything when a patient is that ill, he seemed to understand how dangerous it can be to be if you don´t have hope. He was holding a good position at Karolinska hospital (well known) but chose to take on ME and related diseases despite the stigma and, I am sure, the contempt of some fellow doctors.
Our own theory is that Björn responded so well because Jonas went ”all in” with the medications. And also that Björn was extremely lucky that he did not have any side effects and tolerated everything he tried. I think Jonas has to be more careful nowadays and treat patients more gradually. Unfortunately there was a tv program about long covid that reported that Jonas clinic did not have a proper research permit for a covid project. I think if anything it was a minor mistake, like he had not got the final approval after translating a patient information or something like that ( I think he was really busy) but someone wanted to highlight this and ruin everything. I do not know if it was some competitive other researcher or just the common attitude against the disease that caused this. I would say there are greater crimes committed by doctors against post – infectious and ME patients in the history of medicine. Really unfortunate program and I am happy Jonas still carries on anyway despite the effects this probably had for him personally and in the end for the patients.
I hope our story could help anyone. I read on the clinics website that they do not have the capacity to accept more patients at the moment. But if you have a good doctor that want to help but has run out of ideas, maybe her or him can consult with Jonas for a discussion of treatment ideas, I do not know if this is an option but one can always try.
// Sara
