Question
In China, on Kaletra with pain in ankle and sleeplessness.
28 March 2012. Related: All topics, Stopping treatment.
I have to take one Imodium once daily to control my diarrhea caused by wasting at the moment, plus Kaletra, tenofovir and lamivudine. I am also taking vitamin B12.
My ankle and leg are all hurting and my ankle sweats a lot at night. I often wake up with leg and ankle pain and discomfort.
I have very disturbed and shallow sleep and struggle a lot with weakness, sleeplessness and foot /leg problems.
I started taking treatment from 10 February. I switched from Stavudine (d4T) to Tenovir after 1 month (now on tenofovir, Kaletra and lamivudine).
I am from China and it is difficult to get support.
Why has the ankle sweat and peripheral neuropathy (tingling) symptom worsen after I stopped d4T?
Answer
Hello,
A very similar question has been answered already at this link.
If you are responding to the questions in that answer please could you continue to contact me through the ‘comments’ box below this question.
Any symptoms or side effects need to be discussed with your doctor. It is important that you make sure your doctor knows all of the problems your are describing.
Because you have only recently started treatment it will take some time for you to start feeling better.It is possible that the symptoms you are experiencing are being caused by HIV and not your treatment. You should start to feel better with treatment, and your CD4 should start to increase. Please could you tell me what your most recent CD4 count is?
It is not unusual for symptoms of peripheral neuropathy to continue or even get worse for a while after stopping d4T. It’s not really known why this is but it might take a few weeks before this starts to get better.
You have said that it is very difficult for you to get support where you live. If you can tell me which area of China you live in I will give you details of local organisations who may be able to help you.
Can you tell me if you have ever received any other treatment for HIV before February? I ask because Kaletra is an unusual drug to take as a first treatment.
Is your doctor aware of your symptoms? It is very important that you talk to your doctor about all of your symptoms so that they can help you.
Hi Jan,
It’s understandable that you are reluctant to discuss your symptoms with your doctor. It’s up to you to decide whether they need to be attended to. Sometimes symptoms are easy to deal with if they’re caught early but can get worse over time. Peripheral neuropathy, in particular, can get progressively worse if it isn’t dealt with.
No Rebecca, my Dr. is not currently aware of all my difficulties (only the weightloss as it is so very visible). I have many more issues around my health that are being dealed with in some form and I need to prioritise them as otherwise they will completely take over my life!
Thanks for your comment Jan. Is your doctor aware of all of these symptoms you are experiencing?
John maybe international support on-line from other hiv-positive people is something of value to you in the absence of local support to you. (I am willing to correspond in some way) I am a Dutch guy in the UK, on different medication to you but very similar problems; the weightloss although with additional medication to my HIV drugs it appears to be slowly increasing for me currently and like yourself I suffer nightsweats in general and very painfull leggs that regularly immobilise me for some days, also shaking in the leggs which may be due to peripheral neuropathy.
Hello John,
I just want to make it clear that at i-Base we are not doctors and therefore we can’t comment too much on symptoms. Any symptoms can only be checked by a doctor, who will need to look at them to make any diagnosis. It’s up to you if you think your symptoms are urgent enough to need to see a doctor now. If you are feeling worse each day, rather than getting better, you may want to go and see a doctor before your next check-up in May.
If you are still having problems with diarrhea you can increase the amount of Imodium you are taking. You can take up to 12 Imodium in a day, taken with food. You can increase this slowly over the next few days, only taking as many as you need to stop the diarrhea. By getting your diarrhea under control you should start to feel better and stop losing weight.
Because you started treatment with a CD4 of under 50 it is possible you could experience something called IRIS (Immune Reconstitution Inflammatory Syndrome). This is where the immune system, as it starts to recover, suddenly realises that there are a lot of infections it has to fight against that it was previously too weak to react to. This can cause additional infections like TB and CMV to show and patients can sometimes start to feel quite ill. However, the good new is that whilst IRIS can make things a little more complicated, it is easy to treat. For more information please follow this link.
Can I ask if you have experienced any visual changes recently. Did your doctor check your eyes by shining a bright light into them? I ask because of the risk of CMV (cytomegalovirus) in people with a CD4 count under 50. It is important that this is checked for until your CD4 reaches 50 and above.
You should feel confident that the treatment you are receiving is a very good combination. Many people who are diagnosed with low CD4 counts like yours go on to recover. Since you haven’t had another CD4 reading since starting treatment it is possible that this has already increased without your knowing.
You said that you are worried about confidentiality and stigma where you are living. You are welcome to continue to contact i-Base anonymously through this web post or if you would prefer you can email me directly at rebecca.mcdowall@i-base.org.uk
Dear Rebecca,
Thank you so very much for replying my 2 messages. Really appreciated a lot. Here are some more information as required:
My CD4 count was 9 back in February before starting my first ever treatment. I have never been treated before as i was only diagnosed in Jan. after significant weight loss (now around 50KG) and severe diarrhea for nearly half a year.
My next check is not due till May so I don’t know what exactly my situation is, assuming it is pretty bad as I have been struggling with medication and carried on losing weight.
I am currently on Tenofovir, lamivudine and Kaletra. Sorry I feel it very difficult to disclose which area I am from as there is a lot lot stigma here. I am very scared and worried as I find it more and more difficult now for me to walk far, even 200 meters would take me a long time to manage.
My appetite is always good but I started a lot of dreams and leg hurting one leg after another.
Could you please tell me if I am ever going to get better? Are these symptoms I have experienced just side effect or deteriorated condition? Are there any other patients having similar symptoms like I have, such as ankle sweating and leg hurting, as well as sleeplessness?
Many thanks for your support and help.