My husband has APL, had a few PEs before diagnosis and now on warfarin. He also has Raynauds and a pacemaker ( fitted 10 years ago for heart block despite being a very fit and athletic person) . In Aug this year he had pneumonia .
He has deteriorated quite quickly over the last few months from a fit and active person to being virtually housebound due to severe and constant pain oh his left side, sometimes radiating to his back. His stomach makes constant rumbling noises! He finds it difficult to determine whether the pain is coming from his lung or his stomach but it makes him nauseous. He has lost a stone in weight and is very fatigued . He has had CT scans but they cannot find a cause. Has anyone else had similar experience and if so, what treatment was effective?
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Lorraine44
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Hi there and welcome, firstly who is looking after his medical care? We do have a list of specialists which you can find on this page, or on the actual charity website, you do need somebody who can see the whole picture. Also it is possible and often a frequent thing to develop more than one autoimmune disease. Thyroid problems are most prevalent, and unfortunately the TSH test used by most GP's does not pick up all thyroid problems. Also, many find that they need to be gluten free, it is possible to be gluten intolerant without having fully blown coeliac disease, it appears to me that he may need a new set of eyes or an up to date appraisal of his condition, please come back to us if we can help further. MaryF
Hi MaryF, the last year has been a nightmare. He was originally looked after by respiratory as they thought the CT scan showed lung cancer/ secondaries ( healthy non-smoker) , however lung biopsy showed damage caused by a clot. He was then diagnosed with APL , started on warfarin but what was initially an intermittent pain is now constant . He now sees a Rheumatologist but apts are several months apart. She started him on Prednisolone and Hydroxychloroquine but no difference and I am not sure they have any idea what it is. He has been tested for thyroid, coeliac etc. they mentioned perhaps cutting out a part of his lung!
My son has Ulcerative Colitis and Primary Sclerosing Cholangitis both of which are auto immune .
I remember reading somewhere about a drug for inflammation of the lung lining . I think it began with M but can't remember the name ?
I work in Haematology and a consultant friend said that there are too many drs involved in my husbands care and that someone needs to take charge but how do we arrange that . We have even thought of paying privately as my husband has zero quality of life at the moment but have no idea what the problem is , so therefore no idea who to go to .
Are you in the UK, as if so, you need as said above to go to somebody off the list, many prefer to travel to St Thomas' Hospital: Here is the list, otherwise you will see somebody with only half the knowledge. Also there are drugs for the fatigue. So action plan
Find out the email address for every secretary of consultant and GP involved. If you ring the secretaries they will give you these, then address the email to all the consultants and GP's involved, a joint letter. Add to the letter the charity website, and also the list of consultants.
Ask very clearly to be referred urgently to one of these, failing this, you can self refer to London Bridge which is private, but I suggest you take ALL recent blood tests with you as it is this which adds up costs wise. You also need to ask whoever you are seeing, or arrange to see GP for Thyroid panel to be done, (this may show up normal or not), but as said previously they can be reliable. You also need vitamin D levels to be looked at, also iron and B!
If you are not in the UK, please come back and we will still try and endeavour to help you.
Please be aware that a decent Hughes Syndrome/APS specialist will look at all of this, and also think of helping with the fatigue as well as the anticoagulation issues.
Please write out the history in clear bullet point when you send the email and use this also for any new appointment. MaryF
I think Dr Harris in Fife is listed as an APL expert. He has been put on vit D . My husband was working in Rochester until 9 weeks ago but now not able to travel which is also making it difficult. I worry about challenging someone who is a listed specialist ( we have an apt this Tues) . The GP is excellent and will be open to any suggestions. Just feel at my wits end
Ok, if you are already seeing somebody off the list, then just make sure you or a trusted friend or relative attends the appointment with him, list all the issues, current and past, mention every single thing, good he is on D, but ask if it is possible in the next round of blood tests to look at iron, b and thyroid function also. You are in a fairly good position, as in seeing somebody already who can help, it may just be some fine tuning, also having a GP who is being supportive.
Just write everything down, so that you don't forget on the day. Highlight the weight loss the pain and the fatigue, do not hold back on saying how bad it is, it is clear he needs more investigation, the weight loss will make them want to investigate. MaryF
Thanks Mary. I always go with him and he takes a list of questions. He has written letters to Rheumatologist so hopefully she has some ideas. The weight loss they always relate to infection, pneumonia etc but it is too much/ too long for that I think. I feel that if this time there is no real plan or quicker follow ups then we need to consider London Bridge. I am not sure if we can be referred to an NHS hospital in England as different budget. It was even difficult getting my husbands INR checked when he worked in Rochester Mon to Fri! I will definitely mention contacting this site and the thyroid, gluten issues which is very helpful, thank you. I just feel so awkward asking for a referral ( do you need one for London Bridgr and if so do you think the GP could do it?)
I find it frightening how pale and thin he looks although I think the original misdiagnosis of lung cancer started the fear cycle .
Firstly if you have a good relationship with these people, (the medical consultants and GP), work on that, just be firmer than usual, you need to express he is getting worse. Regarding London Bridge you can self refer as it is private. However have another go with what you have first, as you have such an imminent appointment. Push for a scan, and all the blood tests I suggest, especially the iron and b alongside the D. Best of luck, we are here to help, and please keep using the forum that is what we are here for. Also have you familiarized yourself with the actual charity pages, they are very useful, also various books for sale. Best of luck. MaryF
First of all I am so sorry that your husband is not well. I think he is very lucky to have you. Hope they will soon find the right help for him. I am sure they will!
I wonder also if you know if he has done an Eccocardiography of his heart and lung.
I have APS and also Pulmonell hypertension (goes with APS) and I have also had very high bloodpressure which is now in range after warfarin and high bloodpressure drugs. I have also heartvalve-problems which they could see after Eccocardiography. I guess they can do that on your husband even is he has a pacemaker. The heart-doctor here in Sweden always tells me I must tell him if I am out of breath when exercising.
It is also important to keep the warfarin in its therapeutical range to not have more PEs and clots.
Hope you are not more worried after what I have written. I am sure that you two with the right help will manage this but please take help from someone who knows this illness. We on this site know how important that is and how difficult it can be also.
Thank you Kerstin for your kind reply. Yes, my husband had an Echogram last year which showed clots between the heart and lung. He is due to have this repeated early next year to see if it has changed at all. Up until his pneumonia in August he was cycling up hills without any problems . However he is now unable to walk very far due to pain on his left side. He had a CT scan last month which did not show any new clots or any reason for the intense pain. He was given morphine and then cocodamol which dulls it but doesn't take it away.
His INR had been very stable at 3.5 for several months but because of all the changes in medication etc it has been up and down between 1.8 and 5.1 recently.
I really appreciate the support that you are all giving us
I wonder if it would be worth asking for a two month trial of a therapeutic dose of Fragmin injections instead of Warfarin.
I was on Warfarin for 9 years but after 7 years my symptomatic control declined even though my INR was reasonably stable at around 4.0.
Prof Hughes at London Bridge moved me over to Fragmin and I have felt much better. Because Fragmin works on a different part of the clotting cascade to Warfarin its effect is not measured by INR testing and it is not affected either by food or drink. The dose is just calculated on body weight and an injection every morning, from a pre-filled syringe of the correct dose is a 'fit and forget' daily ritual for me now.
Hi Dave, that is definitely something to consider. The problem that my husband had on Fragmin was because he is so thin, he was finding it difficult finding a site to inject and had bruising all along his stomach area. However it would be worth it to feel better. I will add this to my list of questions for tomorrow. Thank you.
Hi Lorraine, at the international APS meeting in 2013, Dr Hughes reported the association he has noticed of an increased risk of Crohn's disease (as well as celiac) in patients with APS. Since, in addition to the pain, he is having nausea and weight loss ( and your son has a similar condition), it would seem to be worthwhile seeing a GI specialist. If you send me your email address, I can send you the printed version of this lecture (published in the medical journal Lupus) to give to your MD.
Hi Salty, I have sent you my email address. Thank you, that would be great. He has no bleeding or diarrhoea but we will mention it to the Rheumatologist tomorrow.
PepperT, he has not, as far as we aware, been tested for Vit D deficiency. He has been given it to take at the moment as he is on Prednisolone .
Some of this sounds very similar to my experiences in the 1970s. Massive PEs both lungs, down to half of one working poorly at worst point, nobody really understood what was going on, ended up on very heavy doses of Prednisolone and later Warfarin.
Prof Hughes used to start his patients lectures with reference to the use of Prednisolone and a photo of a patient with a bloated face (just as mine was) from the bad olf days. I thought things had moved on.
Pain was initially diagnosed as pleurisy, my left lung still has signs of damage.
I agree with others who suggest a visit to Prof Hughes if at all possible as it sounds like there are too many involved who just don't have the necessary level of experience.
Thank you. I think that you are right, too many people involved and no one making decisions. I am just unsure how to combine advice from the Rheumatologist who is listed as an APL expert with a visit to Prof Hughes i.e. What to say to her. Will she not take it as a criticism? We will see what she says re the large list of questions we have for tomorrow ! Tim, how did you get your pain under control and did the Prednisolone not help at all?
My husband had Rheumatology apt today. She is at a loss as to cause of pain. As there has been no real improvement with Prednisolone (20mg) , she doesn't think it is inflammation, Serositis etc and to start reducing dose. We took along all the suggestions. She is happy to test vit levels, iron etc and change from warfarin to Heparin if think it might make a difference. She has referred him to Cardiology to see if they can find a cause. One CT scan showed that one of the wires from his pacemaker had displaced slightly but the cardiologist didn't think it was a problem. Next apt for Rheum, 6 months time. And so it goes on!!
Hi Lorraine. I'm so sorry that your appointment didn't give any definitive answers for you both. I had to take 100mg of prednisolone daily for a year for the pain to start to subside. I don't believe that your hubbie is getting the treatment he so deserves. I would seriously consider a trip to the London Bridge clinic to be seen privately if it is within your means. The wait to see Professor Hughes is quite long I believe, however, there are other Doctors there such as Professor Munther Khamashter who I can personally recommend, and I know that he has a shorter waiting list.
For the Rheumatologist to give your husband another appointment in six months time is absolutely outrageous. Sadly most of us have jumped up and down and stamped our feet to be taken seriously at one time or another to be given the appropriate treatment that we all so deserve.
Thank you all for your advice and support. It is very much appreciated. This morning we booked an apt to see Prof Khamashta for the 11th Dec. just need to now accumulate all my husbands test results, change my shifts so that I can go with him and book some flights. I am sure it will be worth it
I have heard so much good of that Professor. I am sure the trip will be worth it. Please let us hear how it goes for you. I feel happy for you two. Ask if he should wear some supportstockings on the flight? Too short flight perhaps?
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