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• A few questions
• Posted: 2008-02-13 21:19:14 By Janet C
• Hi There, I am 37 years old, diagnosed with RP when I was 18. I have had trouble with CME the past 10 yrs (just received an injection today), and found out results from my latest VF . I am 30 deg. out of 180 deg. My Dr. recommended " drving only if I have to". I am wondering what is the degree that people usually stop driving? I also wanted to know what success, if any, anyone had with the Vit A Therapy? I have 2 small children, and today the reality of the disease came crashing down on me. I am sure these topics have been discussed many times before, but I am knew to this wonderful website, and would love to hear back from anyone!
  Janet
  Richmond, VA

• Re: A few questions
• Posted: 2008-02-14 10:06:16 By Tammy C
• Hi Janet,
  I technically have "Usher Syndrome" which is the RP and I have had a hearing loss since I was 2. I was diagnosed when I was 30 with RP, my optho located at the Johns Hopkins actually discouraged the intake of Vit A due to high intakes can cause damage to the liver(I believe it was liver not kidney, I get mixed up). I was told I could drive cautiously up until now, 4 yeras later I had to surrender my license. The state of PA says your horizontal vision has to be at least 120 I believe and mine is less than 19. It hit me hard when I had to surrender them I have a 15 year old that is always on the go with sports etc and I could no longer run my mortgage business. I do have alot of friends and family that help me although it is frustrating when you have to rely on people but the bright side is I am in perfect health. Keep your head up high and god bless!!
  --Tammy

• Re: A few questions
• Posted: 2008-02-14 13:41:53 By Brad R
• I take Vitamin A as a hope to slow down RP. I take 15,000 I.U., the Palmitate (water soluable) form of Vitamin A. I was told that the water soluable form is better on your kidneys or liver (I don't remember which one either). I am 35 and I still drive during the day. I will be ending this practice soon. I don't know what my field of vision is because I quit going to a specialist in RP. It was depressing hearing that my RP advanced and that I am losing my sight. I could have told him that without the expenses - LOL. Anyway, I should probably start going to a specialist again. Anybody know of a specialist in Wisconsin? I hope this helps.
  
  Brad

• Re: A few questions
• Posted: 2008-02-15 11:43:53 By Darran Z
• Janet,
  
  The Vitamin A issue is quite conterversial at best. Several FFB Clinicians/Researchers that I know do not recommend it at all. The study has been known to find some flaws in it, particularly the analysis done.
  
  As for driving, check your DMV/DL division and see what the visual requirements are. Many states have VF requirements and if you have 30 degrees, then you likely are driving illegally. I wouldn't recommend it. The risk is too great. There is a story I posted a while back about a driver knowing he had RP continued driving and killed someone. It happens.
  
  Darran

• Re: A few questions
• Posted: 2008-02-15 16:13:42 By Janet C
• Thanks for the messages back. I just talked with the Medical office of Va. DMV, and I am not to be driving. I probably should not have been driving the last few years. I have shed a few tears the last few days....its hard to accept the reality. I guess when what I see, you see clearly, its hard to realize just how much I am NOT seeing to the sides. Giving up the freedom that driving allows at what I consider a young age makes me sad. I have shared my news with my family only, but need to tell my friends. I don't want to be pitied, but I know I will need their help, as we have no family in town.
  I have read a lot of the old messages from the board and have gathered a bit of information. It's very helpful. I think my Dr. agrees that the Vit. A is too risky. I have not been able to find the article you posted, Darran, about the driver with RP who killed someone. Could you direct me where to find it? Thanks again to everyone who has responded. Its nice to hear from people who can really understand and not just ask me " can't you just get LASIK?" :)
  Janet

• Re: Re: A few questions
• Posted: 2008-02-15 17:24:21 By NULL P
• Have you seen this study/trial?
  Drug Reduces Swelling of Central Retina in Patients with RPBy Ben A. Shaberman05/01/2007
  Cystoid macula edema (CME) is a complication in approximately 10-15 percent of people affected by retinitis pigmentosa (RP). CME can cause increased vision loss and retinal deterioration beyond what occurs as a result of RP.Cystoid macula edema (CME) is a complication in approximately 10-15 percent of people affected by retinitis pigmentosa (RP). CME can cause increased vision loss and retinal deterioration beyond what occurs as a result of RP.In an eight-patient clinical study funded by the Foundation Fighting Blindness, Gerald Fishman, M.D., University of Illinois at Chicago, demonstrated that dorzolamide, a drug commonly used to treat glaucoma, is effective in reducing the swelling and cysts associated with CME. Most patients showed sustained improvement of CME with long-term use of the treatment.Though ophthalmologists use other drugs to treat CME including steroids and nonsteroidal anti-infl ammatory agents, many of these treatments can’t be used long term,because of unsafe side effects. With some of these treatments, recurrence of CME is also common.A drug similar to dorzolamide, acetazolamide, is sometimes used to treat CME, but Fishman believes that patients are less likely to experience a recurrence of CME when using dorzolamide.Fishman reports that all patients in his study showed a signifi cant reduction in swelling in at least one eye after using dorzolamide three times a day for one to two months. Six patients showed improvement in swelling in both eyes. Seven patients experienced a small degree of subjective improvement in their visual acuity. Three patients showed visual acuity improvement of seven letters or more.Patients in the study continued treatment with dorzolamide for a period of 7 to 15 months. During that time, six patients showed sustained improvement in CME in at least one eye. Two patients had recurrence of CME in both eyes.Results of the study were published in the January 10, 2007 issue of the British Journal of Ophthalmology.Fishman notes that more patients need to be studied to make a more defi nitive conclusion about the effectiveness of dorzolamide for the treatment of CME. He will expand his Foundation-funded study to further document the sustained benefi t of dorzolamide, and also determine if the drug is more benefi cial when administered at an earlier stage of disease.In a different study, which was covered in the winter 2007 issue of InFocus, Fishman showed that dorzolamide was effective in improving the retinal health of people affected by X-linked retinoschisis.
  

• Re: Re: Re: A few questions
• Posted: 2008-02-17 12:33:49 By Darran Z
• Peter,
  
  I think dorzolamide is the same class as Diamox (acetazolamide) you know, like ibuprofren and ketofren are the same class of drug). Which often Diamox is first prescribed upon CME to see hwo it treats. Perhaps the dorzolamide works a little better.
  
  Darran

• Re: Re: A few questions
• Posted: 2008-02-15 17:37:47 By Peter F
• My son has been on a vitamin regimen for 7 years under supervision of his doctor. He takes 25,000 IU of Beta Carotene, 400 mg DHA, 6mg Lutien daily and 50mg Zinc twice weekly. His last check up in December showed very little peripheral or central degeneration. Whether this is due to the vitamins or not we do not know. However with the Beta Carotene you do not have the negative effects of Vitamin A. If it has any chance of helping we are continuing the vitamins. The detached retina in January was due to abnormaly thin retina in his right eye. We are still awaiting the results of his second surgery last saturday and are praying that he regains the previous level of sight in his right eye.
  my email is marlin04@verizon.net if you want to communicate.Peter

• Re: Re: A few questions
• Posted: 2008-02-17 12:36:48 By Darran Z
• Janet,
  
  It may be on the other RP board (there are two of them here) and it may be under the "Bioptics" thread since soem peopel were discussing whether bioptics work for RP (which they don't). I'll google it and see if I can find the article again. I may have book marked it.
  
  As for Vit A, if you want to try, then go for the beta-carotene route since that is water-soluble and not fat-soluble like the palmitate form. Beta carotene is the precursor to palmitate form and the liver will process what your body needs. If you have excess amounts of beta carotene, it is easily passed through your body without any harms done.
  
  Darran

• Re: Re: Re: A few questions
• Posted: 2008-02-17 17:44:00 By Janet C
• Darran, How do you find the other RP msg board?
  I have a follow up to see if the injection did anything for my CME in 2 weeks, and I will talk to my Dr. again abt the vitamin options. Do you know if the Vit A may be recommended more often to people with more VF left?
  Janet

• Re: Re: Re: Re: A few questions
• Posted: 2008-02-17 18:20:24 By Darran Z
• Janet,
  
  There are two boards on this site because one board had problems. However, the WEb Manager did not join the two boards together to create one.
  
  To reach either board:
  
  1. There is one board on the RP Homepage which I think is where you are posting here.
  
  2. The other board is if you click on Communities (at the top of the FFB Homepage) and click on Message Boards you will see a list of all the message boards. The RP board listed there is a DIFFERENT board than of the RP Homepage.
  
  There is a FAQ in Publications regarding the Vitamin A. There were exlusion criterion as well. People who have I th ink 8 degrees of VF or less were not included because most of the rods are already dead from 10 degrees or less (that is all cone). Certain types of RP have been excluded such as Cone-Rod Dystrophy as well. I'd suggest you look at the FAQs on the Vitmain A approach. If you have trouble finding it, email me at darran zenger(at)yahoo.com and I will direct you towards it.
  
  Darran

• Re: Re: Re: Re: Re: A few questions
• Posted: 2008-02-18 14:11:45 By Brad R
• Darran and Janet:
  
  I was incorrect in stating that I take Vitamin A in the water-soluable format. I take Nature's Plus Vitamin A palmitate in the water-dispersible format (if there is a difference). I had my liver screened and continue to have it screened for toxicity levels. So far so good. The articles on FFB's site relating to Vitamin A therapy all support Vitamin A in the palmitate form and not in the Beta Carotene form - see excerpt. "Beta carotene is not a suitable substitute for Vitamin A Palmitate in the context of this treatment." I found the articles here: http://www.blindness.org/disease/treatments.asp?type=3. So, my question would be, shouldn't people with RP be taking the palmitate form of Vitamin A as noted in the studies and not the Beta Carotene? Am I missing something? I wish to know for my own benefit.
  
  Thanks for any and all information!
  
  Brad

• Re: Re: Re: Re: Re: Re: A few questions
• Posted: 2008-02-18 16:21:03 By Darran Z
• Brad,
  
  While what you stated is correct, th ere is one fundamental issue here--the source of the publication. Now the FFB puts it on the site here but there is only ONE author--Berson--that has published anything regarding Vitamin A. He's the only one in this world woul will convince people of this. He tries too hard.
  
  I have been around this world of RP for 27 years. I also know several world-renowned well-resepected FFB researchers who are either on the FFB's Scientific Advisory Board as a Member or Vice-Chairman. Two of my personal ophthalmologist tell me otherwise about Vitamin A, including one who has started the study with Berson back in 1993 and my current ophthalmologist went to Harvard and knows Berson (he's also got a PhD in pharmacology and does nutrional supplementation studies in addition to his MD degree). Neither one of them blanket the support of Vitamin A. Both tell me they are "interesting results" but nonconslusive. Another FFB researcher told me there were flaws in the analysis as well. Every publication you find on Vitamin A points to Berson's name. The NEI has done their own study but the results are yet to be published. Until there is something independant to confirm this there really isn't much to go on and people really need to sort these facts out instead of getting too excited over this.
  
  Now, as to the beta carotene format, it is a biological known that beta carotene is the precursor to the palmitate form in the body. Your body will convert this to what you need.
  
  Another way to look at it is that in some forms of RP (the rhodopsin mutations) cause RP to progress because of the byproduct that the RPE cannot effectively expel the byproduct. Now Rhodopsin, is created from retinol and thus retinol is created from palmitate. Creating more retinol by taking all this palmitate isn't going to help those with rhodopsin as the excessive creation will increase that byproduct. Thus Vitamin A could accelerate the progression.
  
  Since different forms of RP have different problems associated with them. In the case of rhodopsin, the ineffectiveness of expelling that byproduct is the culprit, not a deficiency in vitamin A. In another form of RP, it would be a specific protien deficiency (there's a theory now that the cells don't "die" per se but get "shut off" due to lack of protein" and each gene isolated is a different protien. That is why it is so difficult to tackle and predict how fast RP progresses.
  
  I hope that helps clarify a few poitns.
  
  Darran

• Re: Re: Re: Re: Re: Re: Re: A few questions
• Posted: 2008-02-20 13:27:05 By Brad R
• Darran
  
  Thank you for the information!
  
  Brad

• Re: Re: A few questions
• Posted: 2008-02-28 10:41:19 By nancy j
• Hi Janet: I'm pretty new to this message board and just read your note. I so understand how devastating these losses are and I know what a struggle it is to get acclimated to living a different kind of life with less freedom and independence. Although I am not there yet, I certainly anticipate it in the near future. These vision problems can cause depression, as I'm sure you know already. Take care and just take it one day at a time.

• Re: A few questions
• Posted: 2008-02-16 13:33:29 By Kim V
• Janet,
  
  I am a professional and my job was dependant on driving. In the last few months it has become very difficult at best. I lost my job due to consolidation on Wed. morning and after much heart ache and discussion with my husband, we have decided it best for me to get together with the drs and give up my license before something happens to me, my children or someone else because I am driving. I am 36yrs old and the reality of not being independant is really hard on me. I know how you are feeling. I also live in a very rural area, so alternative or public transport is very limited, so this is even more upsetting. I have unemployment to rely on for now, but am now wondering what I will do after that, I have an education, but without transport, I am not sure how I can get to work and back and if there is anything that I can do in my field, that doesn't require I go somewhere to work.. Well I wish you the best of luck and let your family and friends know what is going on, they will understand and they will support you and help you with what you need. My husbands family and mine have all been very supportive and I know that my friends will too. I have found in my life that people want to help especially if you will help yourself in the process....Take care and thinking of you, it is comforting to me to know that I am not the only one that struggles with these decisions...Kim

• Re: Re: A few questions
• Posted: 2008-02-17 17:40:18 By Janet C
• Kim, Sorry to hear abut your job. You have alot going on, too! Both of my boys will be home from school tomorrow, so we will have our first day of doing errands by foot/stroller. We have very limited public transport, but a shopping center with a grocery, drug store, sandwich shops and a starbucks less than a mile away. I am thankful for that. The things I am most worried about are the unplanned....like getting a call that a sick child needs to come home from school. My husband is in dental school, and often can not be reached while he is seeing patients. And I imagine once he starts working this summer, there will be plenty of times he will not be able to immediately stop what he is doing. My 3 yr old goes to pre school 2 days a week, and I am going to call them tomorrow and tell them what is going on. I hope they can help me make arrangements to set up some carpools for him. Today my 6 yr old was listening in to my husband and I talking about how things were going to be and he said, "Well, looks like we will be getting a lot of excercise, and that will be good." I think trying to find the positives are the only way I am going to get through this adjustment. I hope we both a s successful first week of no driving! Janet

• Re: Re: Re: A few questions
• Posted: 2008-02-17 20:25:16 By Kim V
• Janet,
  
  Thanks, and good luck to you. I live in a small village and the school is just up the road, so for that I am very lucky!! My boys are 4 and twins that are 2, and I have not ever been just "mom" so I think this will be a new experience for all of us and I am going to just enjoy spending time with them before they get to school and don't want to hang with mom anymore! I really find comfort in the fact I am not alone here, I have lived in somewhat of a state of denial until this point and I always knew this time would come, just hoped it wouldn't. Have fun outside I am quite sure the weather there is better than the weather we are having in Northern NY State (we live about 45min from Canada in the snow belt) Take care and I will be thinking of you as we walk to the post office tomarrow morning!!! Kim

• To Janet in Richmond
• Posted: 2008-03-02 18:57:37 By Mary Beth T
• Janet -
  
  I am 43, single mom of 3 and also from Richmond. I was at 20% 8 years ago when I was told I should stop driving. I ran and didn't look back, but my vision has caught up with me and I cannot run anymore. I had to quit work when I quit driving in December of 07. Now I am at 10-15% restricted field of vision, and have two full blown cataracts. I have applied thru VA Department of Blind and Rehabilitative Services for mobility training and for CARE transit from GRTC. They will come to your door, but you will need an application and a referral from VADBRS, as well as verification from your Dr. I would love to confer with you further if you wish. My kids are 14, 12, and 9 and we are in Henrico. This has thrown me for a loop - so I know exzactly what you're going through. Email me privately if you wish @ moodymb64@aol.com.