Doctors not believing drugs cause side effects

[kylesweet]

Hi everyone

Long story short, I've tried every available medication and they all give me horrible side effects. This has been over a 3 year period, and I've been undetectable with cd4 over 500 the whole time.

Dealing with the side effects has been hard enough, but on top of this I've been battling the doctors at the HIV clinic because they don't believe my side effects are caused by the medications. They think it's psychological due to dealing with my diagnosis. This is complete bullshit. When I change medication the side effect changes, and the side effects are worse an hour after I take the medication.

I'm from the UK and so use the NHS. So people from other countries need to understand that my doctors don't like seeing me all the time because they're underfunded and understaffed. So it's in their interest to make me stop seeing them all the time to switch medications.

Has anyone else had a similar experience where doctors don't believe them? The ironic thing is, if I do have any psychological problems it would be from the psychological stress of having people not believe me. It's come to a point where it is really really annoying me. I thought it's common knowledge that most medications give most people side effects - and HIV medications are renowned for side effects. So are my doctors fobbing me off? Stupid? Or simply mistaking me for patients who may genuinely have psychological problems rather than side effects?

After making a complaint at the clinic a nurse said to me 'if you don't like it here you can go somewhere else'. Isn't that bulling/dangerous to say to HIV patients that frequently have neurological side effects like headaches and depression?!

I just want to know if others have had similar problems with their clinic, and whether I should put up with this.

Thanks

[Jim Allen]

Sorry to hear your having problems, I mean that and that you have not found a way to manage them. I hope you find something that helps soon.

As for the NHS, I have not seen or been near the NHS in over 2 years but sure had my share of problems when i lived in the UK and tended to just explain to them what i wanted and when i wanted it, however I am perhaps somewhat direct with people by nature.

Here is the complaints page, http://www.nhs.uk/NHSEngland/complaints-and-feedback/Pages/nhs-complaints.aspx

You might also try giving the Terrence Higgins Trust a go or at least a call on Monday see if they can help you if you have not given them a try yet.  https://www.tht.org.uk/

Jim

[bmancanfly]

Sorry you are having problems, and I hope you get them resolved.
But this statement simply isn't true:

I thought it's common knowledge that most medications give most people side effects - and HIV medications are renowned for side effects.

Maybe you can give us an idea about what meds you have tried and what problems you have had.  Most people have little to no side effects.  I sure hope you can get to that place too.

[CaveyUK]

The NHS, like any health service, will have variability depending on the individual doctors you see, local guidelines and so on.

If you are not happy with your clinic you can look to switch.

That said, I have certain sympathies with doctors faced with the challenge of possible side effects to any drug, and specifically HIV meds. A lot of folk who take them will attribute anything and everything to the meds... some of that will be valid and some will not be, and will instead be something else (including psychological stress).

If every symptom was acted upon as a nailed-on side effect and drugs were switched, then it could create problems further down the line. So there is a balance needed to be walked. Some side effect symptoms are well known, so they wouldn't be a problem but it tends to be when it gets into slightly more oblique territory - such as something that isn't usually seen with a med, or a collection of milder, less specific issues. I'm sort-of facing this a bit myself at the moment....but thats for another day.

Without knowing your specific perceived side effects it is hard to judge, but in the meantime it may be worth keeping a form of diary or journal detailing any issues you are having, what other medication you are taking, even what food you may be eating and then if nothing else, you have something you can produce to discuss with your doctor and it's far harder for them to be dismissive if you are going to that effort.

In your case you have also gone through a number of treatments, so presumably you have been taken seriously in the past and the range of combos given is probably fuelling the theory that it may not be the meds at root cause.

Only playing devils advocate, so please don't feel I'm being over critical. I certainly think detailing them for your doctor in a fairly detailed way will help any discussion.

[harleymc]

If you have tried every available medication, then what do you want?
Do you want to stop medications, stay on your current ones or go back to a previous regime, those are your only three options.

[mecch]

kylesweet  - I dont have side effects. Not in the sense of daily living.  Most people I know dont have much or any in the sense of daily living. 
Maybe you should pursue the possibility that its a mixture for you - half somatic and half "side effects".  I am not a doctor nor in science and my opinion is that people who are tense and constantly self monitoring their body and feelings are going to notice a lot more than people who just take medicine in stride and have other things in life occupying their minds most of the time.
What exactly are all these distracting side effects you are experiencing on every combination available in the UK?
I am sure you are feeling something but like harleymc says, your only way forward is to learn to live with treatment and get on with other things.

[Mightysure]

What side effects are you having? Not all medications have debilitating side effects. Maybe they're right. Not sure. But I'm not sure what you want out of this.

[sawgrass]

In my experience I have found that these medications affect every one differently and CAN cause debilitating side effects. Ive suffered over 10 years on these meds, and while they did keep me alive the quality of life was hindered greatly. Severe migraines, fatigue, pain in joints and muscles, nausea, flu like symptoms on a monthly or every other month basis, etc.

My current specialist dr also tells me the side effects Im experiencing on my new medication of Odefsey dont exist, but the manufacturers website says they do and to notify your dr immediately! lol I think I need a new Dr, as you might to, unfortunately I dont have many options locally with people well versed in this type of medicine and disease.

[Jim Allen]

these medications affect every one differently and CAN cause debilitating side effects

Any medication can have side effects for some people. Take a look at aspirin packet insert its pages of doom and gloom, thankfully fine for most.  In short you can also be allergic to just about everything and anything, HIV meds are very tolerable for the majority nowadays and for the few having problems in developed nations there are more than a few HIV medications to choose from so that is also good.

Best you can do is treat any underlining conditions be it physical or mental and if you have side effects either manage it/live with it or work out what is spesificly is causing the reaction or perhaps interaction even and than if needed change it or switch to alternative HIV line of meds. Whatever the case maybe as always do work with your doctor on finding a solution that suits you. 

All the best

@OP

How did you get on with the NHS? Did you switch clinics/doctor in the end?
Jim