I was fortunate to have been diagnosed with symptomatic sick cell trait at the age of 16. I have had exceeding severe yet infrequent crises all my life. However, there were symptoms SCD patients with the full blown disease HB SS have that I never had or only had once or twice. My hematologist said that SCD patients tend to have more severe symptoms with age. I am now 51. He imagines the same might be true for trait patients like myself.
Acute Chest pain only started about 7 years ago. Now a new symptom has occurred. At first it seemed unrelated and not aggravated by my sickle cell trait. I have Acute Iritis. I have had it four weeks. No connection to the trait occurred to me until after my ophthalmologist ran blood test that all returned negative except for an elevated ESR (a general indicator of inflammation). She asked me if I had any signs of arthritis or other inflammatory disease. That is when I told her about sickle cell trait symptoms, while I was not in crisis or experiencing any severe symptoms, I was having moderate inflammation particularly in my hips. It has been four weeks so far. My right eye was minor and has healed. However, my left eye remains severely sensitive to light. Two weeks ago I went to the ER with a sharp stabbing pain through the center of my left eye.
I am wondering if any of you SCT (sickle cell trait) or SCD (sickle cell disease) patients have experienced Iritis, which you believe was attributable to sickle cell. If so, would you be kind enough to share your story. If the disease progressed to blindness, how long did it take? If the problem resolved on its own or with medical intervention, how long did that take? How did they treat you? In a week, I will get a second opinion from a different ophthalmologist who specializes in Iritis/Uveitis. I admit to being a little frightened. Lastly, I have not decided whether or not, I will mention to the new doctor that I experience symptoms due to sickling red cells. I hate to be labeled a faker or ignorant when in contact with a new doctor. I usually wait until all their test come back negative then I tell them about my worse crises. However, time might be of the essence. We are talking about my eyes. What do you think?
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RadiantSue
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I have not personally experienced this but it is a known possibility with both SCD and SCT. Here is an article of how a man with trait had his visual cortex affected and died from misdiagnosis. But you have a knowledgeable hematologist. So they can help you work with your ophthalmologist. They should treat you the same as disease when it comes to your eyes.
Thank you! I found the second article particularly insightful! Years ago I ignored what "may" have been several episodes of hyphema. I made the mistake of researching the condition online myself and assuming it was nothing. It was awful for co-works to look at and it came back a few times, but that was years ago. At the time I thought it was just a burst of a small blood vessel, but now I am not so sure. I wish i had seen a doctor at that time. On the other hand, I was fine until now. My left eye pressure is only 20 and so far my vision is still good. I see a specialist on Friday (i.e. an ophthalmologist who specializes in uveitis) . I am concerned about still have eye pain after weeks of steroid, antibiotic and dilating eye drops. My right eye seems almost cured except when in direct sunlight. However, my left eye remains a concern. So, I will ask to have my perimeter vision tested just in case.
Thanks again! It was kind of you to respond so quickly!
OMG, I have had Iritis for 16 years, I thought it was a systemic issue from the colitis that I had. I had colitis since i turned 30. It became so severe in 2001 when I was pregnant with my last child that they had to remove my entire colon as it was bleeding from need to end. Unfortunately I still dealt with iritis which had been an issue since 2001 as well. I had seen several specialist who continually put me on Predinsolone eye drops. It wasn't until a couple years ago that I was referred to a rheumatologist by my eye specialist. That was a life savor because after trying a few oral drugs, which did not work, he put me on Humira. I have been taking the injections bi monthly for almost two years and have been symptom free or the iritis. I do have lots of floaters in my eyes and my left eye will no longer dialate which hurts in the light. But I'm not loosing sight and only wear glasses for up close work or reading. I did not even think that this could be a symptom of the SST?
I hope this helps you, maybe you could try the Humira and see if you have some success.
Thank you for your reply. I am feeling much better. I still have some light sensitivity and floaters as well. The sub-specialist was very helpful. I have also been referred to a rheumatologist by my primary care physician.
I also have sct .. aside of being told I have it, I never related any of my problems to it, untill recently considering it a possibility. I've never gone to see a Dr or anything about it... I'm really uneducated with it.. I'm 39 year old almost all white male .. I hurt alot.. I'm saying way to much... I've had the joints taken from my feet I'm my late 20s because of arthritis.. now in need of a ankle replacement.. currently dealing with a torn bicep tendon.. I get cramps in my legs often muscle aches and joint pain...pain in my torso that now I wonder if it's organs or muscle.. ive had problems with my eyes and light.. I have no clue what's related to what and have no idea who to talk too.. I'm kinda used to pain and suffering.. but I'm really tired of it and want the quality of my life to be better..
I recommend you ask your doctor to test you for sickle cell variants. As you have read on this web site, some SCT patients also have severe symptoms. However, first I recommend you make certain you do not have a form of SCD which is harder to diagnose. There are hemoglobin variants other than HB S (sickle cell hemoglobin) that will be recognized as the SCD. In the meanwhile, hydrate, hydrate, hydrate. Did I mention you should stay hydrated? Stay warm in cold weather. Do not become overheated. Are you a very active person? Are you an athlete? When I was much younger in my early twenties, I was on three volleyball teams at the same time. I was fine for months. Then, suddenly, one day for no apparent reason I felt anemic like I was dragging my body around. I felt like someone was pinning me to the bed. Next I had the third worse crisis of my life. I suspect I got dehydrated playing outside and may be was fighting off a cold at the same time. Twenty years later, I had both hips replaced. Nonetheless, I have become good at heading off crisis or turning it around as fast as possible. I tell doctors I am a plant if you water me I usually improve quickly especially if treated early on. Sometimes you may be too dehydrated to recover by simply drinking water, then you will need IV fluids. At least for me, if IV fluids are given early I become significantly better. Ask for IV fluids if you feel dehydrated in the doctor's office so will do so. An ER will alway give you IV fluids in my experience. You will encounter people who will be reluctant to treat the severe pain with the narcotics it requires, but no one will deny you IV fluids so get them sooner rather than later. Next cancel appointment /commitments / promises at the first sign of being in serious trouble (if you can live with yourself doing so), and rest, rest and rest some more at the first sign of serious trouble. Drink water. Ask the doctor to prescribe a prescription strength anti-inflammatory and take it when fighting off a crisis. Soak in warm water. If the pain gets of ahead of you, go to the hospital try to remain calm and/or take a calm friend who can speak for you when you are distracted by off the scale pain. It is tricky with ER fears about drug addicts, but you will most likely only respond to a narcotic. I dislike them but sometimes they are essential. Severe pain itself is damaging to the body and mind. In my opinion, humans were not meant to endure the pain of a severe sickle cell crisis. It is inhuman. Later, you can wean yourself from the narcotic, after the pain drops from unimaginable to just moderate. I hope this helps. I apologize for the lengthy reply, but your symptoms are very similar to my own so I wanted to provide a complete response.
I forgot to mention the reason rest is so essential at the first sign of serious trouble is because many people do not know that sickled cells can revert back to a normal shape for some period of time and then they sickle permanently. I will look the study I read that confirmed observations of my own pattern. I noticed that 7 times out ten I could recover and avoid a full crisis. I noticed that on the third day I either began to feel better, or I became worse rapidly. A study showed that after three days most sickling was irreversible. Do not take my word for it. I will find the medical research study I read - in a few days. Lastly, some times I do not get even one day. My worse crisis went from perfectly normal to the worse event of my life in about six hours. I was driving home to rest and then just barely made it to the ER. Best wishes! May all your dreams come true! Sickle Cell Trait crises have made me appreciate life all the more!
I'm so sorry to hear this. Don't listen to doctors who tell you that SCT has nothing to do with it, especially your pain in legs and aches. Apparently as I'm learning, we (SCT carriers) can experience pain crises. Also, don't listen to those who say SCT is a "black thing." SCT can be diagnosed to people of all ethnicities, but primarily blacks.
I have had pretty severe problems with my eyes over the last two years. I am in my 40s and I know that's eye sight can deteriorate at this time but mine has done so at an alarming rate. I am unable to go out now without sunglasses if there is more than a crack of sun on show as I just cannot see for having to Squint. The irritation and dryness of my eyes is now a regular occurrence...the dryness is so bad it feels like I am shutting rough shutters over my eyes rather than how it felt just a couple of years ago... And my vision has gone from 20/20 vision with no glasses to varifocals for every day seeing and reading...other members of my large family without sickle cell trait are not experiencing these problems so I too am wondering whether this is just the time of life or something to do with sct...
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Stay warm in cold weather. Do not become overheated. Are you a very active person? Are you an athlete? When I was much younger in my early twenties, I was on three volleyball teams at the same time. I was fine for months. Then, suddenly, one day for no apparent reason I felt anemic like I was dragging my body around. I felt like someone was pinning me to the bed. Next I had the third worse crisis of my life. I suspect I got dehydrated playing outside and may be was fighting off a cold at the same time. Twenty years later, I had both hips replaced. Nonetheless, I have become good at heading off crisis or turning it around as fast as possible. I tell doctors I am a plant if you water me I usually improve quickly especially if treated early on. Sometimes you may be too dehydrated to recover by simply drinking water, then you will need IV fluids. At least for me, if IV fluids are given early I become significantly better. Ask for IV fluids if you feel dehydrated in the doctor's office so will do so. An ER will alway give you IV fluids in my experience. You will encounter people who will be reluctant to treat the severe pain with the narcotics it requires, but no one will deny you IV fluids so get them sooner rather than later. Next cancel appointment /commitments / promises at the first sign of being in serious trouble (if you can live with yourself doing so), and rest, rest and rest some more at the first sign of serious trouble. Drink water. Ask the doctor to prescribe a prescription strength anti-inflammatory and take it when fighting off a crisis. Soak in warm water. If the pain gets of ahead of you, go to the hospital try to remain calm and/or take a calm friend who can speak for you when you are distracted by off the scale pain. It is tricky with ER fears about drug addicts, but you will most likely only respond to a narcotic. I dislike them but sometimes they are essential. Severe pain itself is damaging to the body and mind. In my opinion, humans were not meant to endure the pain of a severe sickle cell crisis. It is inhuman. Later, you can wean yourself from the narcotic, after the pain drops from unimaginable to just moderate. I hope this helps. I apologize for the lengthy reply, but your symptoms are very similar to my own so I wanted to provide a complete response.
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