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 Post subject: Newly Diaganosed.
 Post Posted: 07 Dec 2017 08:45 
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Joined: 07 Dec 2017 07:38
Posts: 14
Hi I have been newly diagnosed with Rheumatoid Arthritis. I have an appointment to see a Rheumatologist on Monday the 11th December.This will be my first visit. The Rheumatism is affecting both shoulders, both hands and wrists, both knees and my right foot. All this literally came on over night. I always thought that it was a gradual progression. I am in a colossal amount of pain to the extent i feel I cannot go on sometimes I have been like this for 8 weeks. The problem that I am having is about the medications that are used for this condition. I am already on several for other ailments like Diabetes, Underactive thyroid, blood pressure ect. My body is not very good with accepting medications , if there are side effects to be had then I will surely get them. I have been reading about the side effects of rheumatic drugs and It scares the life out of me. There is some serious side effects and I just don't know what to do I feel like I am between a rock and a hard place.


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 09:30 
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Hi bluejay6497
firstly I would just like to welcome you to the forum, you will meet lots of people on here who understand your concerns and also some who, like you were extremely concerned about the side effects of the drugs. There is no getting away from the fact that all drugs carry side effects and some of the most commonly used drugs for arthritis sound frightening.

The most important thing is to be very honest with your rheumatologist so that they understand that you are very concerned. It is best to find a treatment that you are willing to take so that you can start to get your arthritis under control as soon as possible so that your quality of life starts to improve. Ensure you have a contact number to phone should you be concerned about any side effects that do arise so that you can be assured of whether to continue taking it or not. Most rheumatology departments have a number you can call for this.

Having said all this most people take their medication with none or very minor side effects so whilst it is important to be prepared for your own peace of mind you may well find that everything runs smoothly. Lots of people with arthritis also have other conditions which does mean they end up with quite a few tablets to take every day, the combination keeps them well and able to get on with life.

With the sudden on set of your arthritis you are bound to feel overwhelmed at present so be gentle with yourself and rest assured that the very positive thing is that you will be monitored carefully with blood tests during the early months of your treatment and that things will get better for you.

Come and chat here to others, there is no such thing as a silly question or concern, the members here are very supportive and will be with you during these early times. Let us know how your appointment goes
Best Wishes
Sharon

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Sharon Kilty
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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 09:47 
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Joined: 07 Dec 2017 07:38
Posts: 14
Quote:
Hi bluejay6497
firstly I would just like to welcome you to the forum, you will meet lots of people on here who understand your concerns and also some who, like you were extremely concerned about the side effects of the drugs. There is no getting away from the fact that all drugs carry side effects and some of the most commonly used drugs for arthritis sound frightening.

The most important thing is to be very honest with your rheumatologist so that they understand that you are very concerned. It is best to find a treatment that you are willing to take so that you can start to get your arthritis under control as soon as possible so that your quality of life starts to improve. Ensure you have a contact number to phone should you be concerned about any side effects that do arise so that you can be assured of whether to continue taking it or not. Most rheumatology departments have a number you can call for this.

Having said all this most people take their medication with none or very minor side effects so whilst it is important to be prepared for your own peace of mind you may well find that everything runs smoothly. Lots of people with arthritis also have other conditions which does mean they end up with quite a few tablets to take every day, the combination keeps them well and able to get on with life.

With the sudden on set of your arthritis you are bound to feel overwhelmed at present so be gentle with yourself and rest assured that the very positive thing is that you will be monitored carefully with blood tests during the early months of your treatment and that things will get better for you.

Come and chat here to others, there is no such thing as a silly question or concern, the members here are very supportive and will be with you during these early times. Let us know how your appointment goes
Best Wishes
Sharon
Thank you Sharon for your kind words of support. Like you say it is very overwhelming at the beginning and not knowing who to turn to. I can only hope at this stage that I will have very few or better still no side effects. I will definitely let you know when I have seen the Rheumatologist and what he has to say.


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 12:50 
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Joined: 14 Sep 2011 15:40
Posts: 1304
Hi there, welcome aboard....really sorry that you had to find us. First let me say that this is a really good place to come with your fears and anxieties, the folks here are wonderfully supportive and ready to listen whilst we unload.

I also have rheumatoid arthritis, for around 12 or so years but I probably had it for a while before diagnosis. Like you I take meds for several other ailments so I would say don't panic. There are all kinds of meds out there for RA, and if one doesn't suit you they have lots of options to try, for me the key is to be very honest with the rheumatology team and trust their experience to help you.

Gaining yet another medical problem can feel very overwhelming and isolating and it's important to talk those fears and anxieties through, also I think when others share their experiences you begin to feel less alone and see that there is still much that can be enjoyed and achieved, it's a matter of tweeking what we do and how we do it. Once the right combinations of meds are found your pain will be much better controlled and you'll find your own ways of doing things. For me a key thing is to rest well as fatigue is a major part of the RA. There is lots of information available to help you understand this disease better, and to share with family/friends/employers etc.

I hope your initial rheumatology appointment goes well, it's helpful to take along someone to listen with you in case you don't catch everything the doctor says, and I always take along a list of what's been happening physically and also any questions I want to ask. It will help the rheumatologist if you can take your repeat prescription with you so they know what meds you already take.

Let us know how you get on next week.

Deb x


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 13:30 
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Joined: 07 Dec 2017 07:38
Posts: 14
Quote:
Hi there, welcome aboard....really sorry that you had to find us. First let me say that this is a really good place to come with your fears and anxieties, the folks here are wonderfully supportive and ready to listen whilst we unload.

I also have rheumatoid arthritis, for around 12 or so years but I probably had it for a while before diagnosis. Like you I take meds for several other ailments so I would say don't panic. There are all kinds of meds out there for RA, and if one doesn't suit you they have lots of options to try, for me the key is to be very honest with the rheumatology team and trust their experience to help you.

Gaining yet another medical problem can feel very overwhelming and isolating and it's important to talk those fears and anxieties through, also I think when others share their experiences you begin to feel less alone and see that there is still much that can be enjoyed and achieved, it's a matter of tweeking what we do and how we do it. Once the right combinations of meds are found your pain will be much better controlled and you'll find your own ways of doing things. For me a key thing is to rest well as fatigue is a major part of the RA. There is lots of information available to help you understand this disease better, and to share with family/friends/employers etc.

I hope your initial rheumatology appointment goes well, it's helpful to take along someone to listen with you in case you don't catch everything the doctor says, and I always take along a list of what's been happening physically and also any questions I want to ask. It will help the rheumatologist if you can take your repeat prescription with you so they know what meds you already take.

Let us know how you get on next week.

Deb x
Hi Thank you so much Deb for your welcome and your kind words of support it really helps. It really is a frightening place to be at first. As I am sure you know only to well yourself the pain can be overwhelming. I will be letting you know how things go on Monday with the Rheumatologist. I want to thank you once again for answering me Deb at the moment I am feeling a bit sorry for myself and teary. I to hope things go well on Monday. x


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 17:44 
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Joined: 22 Apr 2010 17:15
Posts: 28464
Hello, it's nice to meet you but I am sorry you have had to find us. I have another kind of auto-immune arthritis which was a slow-burner but I am aware that for an unlucky few RA can hit suddenly and hard. :(

I've been on medication since I was 12 and have not had much bother with side effects (admittedly I always blithely assume I won't have any). My arthritis began back in 1997 but I didn't begin any meds until 2002. I had a brief hiccup with one med back in 2006 but felt perfectly well. I am currently on methotrexate and humira and have no trouble with either (apart from feeling a little more tired every now and again after I've taken them). When the meds are begun we are very closely monitored with regular blood tests, hopefully your rheumatology unit will have a Helpline you can ring (with mine you leave your details with a brief message and someone calls back) and hopefully your GP will also have some understanding of the meds etc.

For your first appointment it is worth making a note of what areas are affected, pain and tiredness levels, whether morning stiffness eases and by when so that the rheumatologist gains a better all-round picture of you and how you are being affected. I do not know how the diabetes will impact (are you type 1 or 2?) on the treatment he can offer but he may want further tests before he prescribes any medication. Are you able to take someone along with you to be an extra pair of ears?

I wish you well and please let us know how you get on. DD


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 07 Dec 2017 18:20 
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Joined: 07 Dec 2017 07:38
Posts: 14
Thank you DD It is such a comfort to have found this forum. I really must start to think positive about this diagnosis but that is really difficult as my mood is so low at the moment and my pain is extreme. I will do as you suggest and make a list of pain areas, meds that I am already on.ect. Hopefully on Monday after my appointment I will feel a bit more positive and hopeful.


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 09:39 
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Joined: 22 Apr 2010 17:15
Posts: 28464
Why should you start to thing more positively? You have had a dreadful shock, you need time to absorb this awful news and then you will deal with it in a way that suits you. I remember my plunge into depression in 2011 when my OA was diagnosed: I naively thought that one could have either OA or an auto-immune, I didn't know that both was an option: I do now. :lol: DD


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 12:49 
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Joined: 27 Oct 2012 20:16
Posts: 403
trying to think back when I was first told about Rheumatiod Arthitis , was along time ago , mid 90s the so had it over twenty years

the drugs are not that bad , I started one of the new biologics a few months ago & getting on with it fine & was on methotrexate for 18 years , & things have changed alot since I first developed RA & new drug are being developed all the time , so there is hope they will find a good treatment at some point so stay positive


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 13:06 
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Joined: 07 Dec 2017 07:38
Posts: 14
Thank you Trepolpen It is very reassuring to hear that the meds are not that bad this is my greatest fear at the moment. I am just hoping that I will get one that suits without many side effects. I have had a really bad night ended up sitting in the chair all night to much pain everywhere to be able to lay down. I have severe pain all the time but is it normal for that pain to get really really bad where it lasts a few hours then subsides again. ? It feels like I am having a flair up on top of a flair up. I'm so distressd at the moment and don't know what to do to help myself. :(


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 18:15 
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Joined: 25 Nov 2009 17:05
Posts: 19726
Hi bluejay6497
Sorry I cant offer much advice, but just want to say welcome to the forum, if you do a search at the top of the forum you will get more info, like you say it helps to talk to people that understand some of that you are going through.. :)

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Barbara


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 18:21 
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Joined: 22 Apr 2010 17:15
Posts: 28464
Pain is the body's alarm, it tells us that something is wrong which needs to be fixed and when it is, it goes. My alarm started ringing in one joint back in 1997 and is still merrily ringing away in many more but for you this is a very new experience and it will seem proportionately worse because it's all so new, so different, so unnatural, so appalling. Pain demands attention - learning not to pay any is very difficult.

The quicker the diagnosis, and the sooner one begins the meds, the better the outcome can be. One of the benefits of bringing the disease under control is that pain levels can be reduced, and for many that is a reality. What pain relief are you taking? DD


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 19:16 
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Joined: 07 Dec 2017 07:38
Posts: 14
Thank you Barbara and DD I am only on painkillers at the moment. Ibuprofen and paracetamol. I have an appointment on Monday with the Rheuamatologist which will be my first visit.


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 08 Dec 2017 21:28 
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Joined: 27 Oct 2012 20:16
Posts: 403
you will need one of the DRAMD drug to help control the RA , Methotrexate was the main drug they used but dont know what they will give you , folic acid will help with the side effects & if you read up about the drug remember its a drug used to treat cancer at a lot higher level so you wont get hair loss but they will tell you about the drug they use so sont worry

as dreamdaisy said , think of pain as your freind & telling you when you need to rest but it will get better & they will get it under control , & they can quick track you onto the biologic drugs used to treat RA


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 Post subject: Re: Newly Diaganosed.
 Post Posted: 11 Dec 2017 17:49 
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Joined: 07 Dec 2017 07:38
Posts: 14
I'm devastated. :(


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