My doctor just doesn't get it

As5567

My doctor has been saying I have an infection now for 3-4 months because of scaring on my lungs. I have said all along I don't have an infection and that my blood levels are always really high when I'm having a bad flare and not on any medication. She says for my blood levels to be so high I must have the worst case of AS she has ever seen and that its more likely to be an underlying infection somewhere.

Fair enough I said and I followed her advice, stayed in hospital for 2 weeks, had many scans and 2 CT scans along with multiple blood tests and nothing was found. I also had 2 week course of IV antibiotics. After this I kept telling her I don't have an infection and I think she should start me on my new biological now. She didn't want to start me on my new biological drug until I saw a chest specialist who said that I have fibrosis of the lungs most likely caused by my AS and that things could possibly get worse unless I get the condition under control. You'd think that would be enough to convince my doctor to prescribe me my Biological drug...well she has since prescribed it but only at half the dose. The dose which I'm on works really well after about 1 week, and then after the 2nd week I'm completely back to how I was and can really see a huge difference in my chest pain and breathing. 2 weeks ago I went to see an infectious disease specialist who said there is nothing wrong with me and that everything is AS related.

Even after seeing 2 different specialist, multiple blood tests, x rays and CT scans she is still convinced I have an underlying infection! At my appointment today she refused to give me the full dose and said it would be at least 6 months before she considers it. Does anyone else think im being unreasonable here or do you think she's being way too cautious. For her sake of mind I am also on weekly blood tests, and the first 2 weeks shown a huge improvement in my blood results. Surely they would have gone worse if I did have an infection due to my immune system being killed down. Another reason I'm really trying to push for the full dose is so I can get off this pred, I'm still on 20mg right now and cant lower the dose any more until I can get the full dose of my TNF.

dreamdaisy

I think it might be a little dangerous to assume that twice the dose will equal twice the benefit but if you get it then I hope it proves to be the case. I take the full fortnightly whack of humira and gain three-five days of slightly improved mobility, hurrah! The fact the other eleven-nine days are rubbish is neither here nor there.

We cannot say if she is being unreasonable or not but I would have thought that the evidence of lung fibrosis giving scarring should be proof enough that you need more than she is offering. Perhaps you are the worse AS case she has ever met, if so then she too is in new territory which may explain her reluctance. DD

stickywicket

I'm sorry I can't help. I can see both points of view. You, naturally, want to be as well as you can be as soon as you can but she is scared of inflicting a different kind of damage on you. It's a very tough dilemma and I hope it will be resolved soon.

barbara12

Sorry I am another that might not be much help,but I am a great believer that we know our own body's..so I do think they should listen to you, but I can understand them being cautious
They should take heed that the fibrosis getting worse , I just hope that you get some proper help very soon, and like you say coming off the preds in itself will be good..I do wish you well and please keep us updated..x

As5567

dreamdaisy wrote:

I think it might be a little dangerous to assume that twice the dose will equal twice the benefit but if you get it then I hope it proves to be the case. I take the full fortnightly whack of humira and gain three-five days of slightly improved mobility, hurrah! The fact the other eleven-nine days are rubbish is neither here nor there.

We cannot say if she is being unreasonable or not but I would have thought that the evidence of lung fibrosis giving scarring should be proof enough that you need more than she is offering. Perhaps you are the worse AS case she has ever met, if so then she too is in new territory which may explain her reluctance. DD

Twice the dose should offer the same benefit just for longer of a duration. It is meant to be prescribed by weight, I think its something like under 100kg = 50mg over 100kg = 100mg. The 50mg does really make a huge difference for the first week or so but then from there I go down hill so fast and I'm back to not being able to walk, extreme chest and back spasms and breathing difficulties which seems to get worse and worse as the weeks go along. She is in new territory with AS anyway, she told me she doesn't normally deal with AS patients because they used to all be sent to the old hospital I went to due to them having a specialist clinic for AS. I guess she has been thrown in at the deep end and is maybe playing things a bit too safe...

As5567

stickywicket wrote:

I'm sorry I can't help. I can see both points of view. You, naturally, want to be as well as you can be as soon as you can but she is scared of inflicting a different kind of damage on you. It's a very tough dilemma and I hope it will be resolved soon.

I do see her point but she really doesn't listen, being on high doses and pred and pain killers now for 3 months is bad enough for my health. They are only going to cause more health problems for me in the long term if I keep taking them for any longer. I have tried really hard to get below 15mg of pred but it's just not possible to cope with muscle spasms 24 hours a day. By taking the pred I get a small break for around 8 hours which is typically when I try to get some sleep.

barbara12 wrote:

Sorry I am another that might not be much help,but I am a great believer that we know our own body's..so I do think they should listen to you, but I can understand them being cautious
They should take heed that the fibrosis getting worse , I just hope that you get some proper help very soon, and like you say coming off the preds in itself will be good..I do wish you well and please keep us updated..x

Coming off the pred will be very good, I've already gained too much weight while being on these tablets and I now have problems with my skin splitting/ripping open randomly in between my fingers and toes which is just another added pain to deal with. And who knows what damage it's doing to my bones

stickywicket

I do see where you're coming from but I think you're banging your head against a brick wall. We can't force consultants to do what they feel would be bad for us. It must be so frustrating for you.

Boomer13

Things really sound pretty terrible for you, I am sorry. I've recently had to postpone starting a biologic and was sent away with lots of pred and told to manage the best I can for now. It's a tough place to be, especially when you know there is something there that could help. Sending lots of empathy, sorry I don't have a solution.

dreamdaisy

I think I've worked out what you meant; taking a dose every week instead of every fortnight, is that it? DD

As5567

Almost, the dose will be 100mg every 4 weeks. I'm currently on 50mg every 4 weeks which is half of the correct dose based on my weight. If after 6 months I don't get a full months benefit still then there is an option for me to have the injection at 100mg every 2 weeks.

So far I like this medication and it seems to work enough to let me get about at my own pace. Its still early days and I'm sure the medication will work even better as time goes on, I just wish I was on the correct dose right now to give me the best possible chance to start back at uni in Oct.

Boomer13

If she has decided you must wait six months for her to prescribe the full, correct dose, perhaps she would be willing to consider bumping this date up to three months if you still show no signs of infection then. This might require some artful, positive negotiation on your part. Worth a try?

As5567

Well I'm going to try and make an appointment to see her next week because nothing has come in the post and she said she wants to see me once a month to review my bloods with me and to see how I'm getting on, its been 6 weeks.

I have so far managed to cut my steroid dose down to 7mg, which has been very hard and I'm having lots of withdrawals I think, but I will have to put up with them until I'm off this drug. My gp has advised me now that I'm at 7mg to only reduce it at 1mg/week until 4mg and then 1mg every 2 weeks so I have a long time to go yet. I forgot how long and hard it can be to get off these things.

My argument is going to be that I've cut my steroid dose down to a low dose and for her to consider giving me the higher dose of my biologic now, I also know she has recently got a letter off my infectious disease doctor saying that in his opinion I have no underlying infection but there is a high chance that I could get a chest infection from the fibrosis which is being caused by the AS. That letter in my opinion is telling her she needs to sort out my condition or I actually will have an infection. Even if it means weekly bloods for the foreseeable future at this point I really don't care about having blood I've gotten used to it and it's not a bother anymore

stickywicket

You've done very well on cutting down the steroids but, yes, this is the tough bit ahead. I hope the appointment goes well.

Starburst

I'm sorry you've had such a frustrating time, on top of having been so unwell and in hospital. I really hope that this letter will give your rheum the (gentle and polite) nudge that she needs to accept your condition as it is. I'm not sure how easy it would be but is it possible to get another rheum opinion if she continues to persist down the 'this is an infection' route?

As5567

Starburst wrote:

I'm sorry you've had such a frustrating time, on top of having been so unwell and in hospital. I really hope that this letter will give your rheum the (gentle and polite) nudge that she needs to accept your condition as it is. I'm not sure how easy it would be but is it possible to get another rheum opinion if she continues to persist down the 'this is an infection' route?

Sadly the hospital that I've been forced to move to only has 2 doctors and they both are not very helpful. The main problem is that neither of these doctors have any interest in AS and they didn't treat anyone with AS until Oct 2013. Everyone in my local area with AS would go to another hospital in a different county that had a weekly AS clinic along with special group physio, hydrotherapy and a helpline that ran 7 days per week. Now I'm left with a doctor who is fairly clueless about AS (In terms of complications, areas of pain etc etc, she said at my first appointment I have no signs of any arthritis without even running any blood tests) Their helpline is also next to hopeless, its only available to leave a message between 9AM-1PM on Monday and Friday and you will get a call back from a secretary asking to take a message.

I'm stuck with her for now while and wait for my appeal to move hospital to be looked at for the 3rd time.